i thought i'd share this, which i found on
dailystrength.org.
this is a list of all the various treatments people
with lupus have tried. includes number of people who
tried it and percent of people who found it helpful.
Just like my surveymonkey.com survey, plaquenil and
prednisone top the list. not surprising, as prednisone
was the first drug used for SLE, and plaquenil was the
2nd.
Plaquenil Hydroxychloroquine is an antimalarial drug, 651 Members helps: 83% of the time
Prednisone synthetic corticosteroid 604 Members helps: 90% of the time
Naproxen non-steroidal anti-inflammatorydrug (NSAID) 15 Members 86% of the time
Cymbalta Duloxetine hydrochloride for major depression... 14 Members 93% of the time
Neurontin Gabapentin for the treatment of seizures and nerve damage/ pain... 13 Members 100% of the time
Folic Acid water-soluble B vitamin. 13 Members 100% of the time
Lyrica anticonvulsant drug used for neuropathic pain, 13 Members 100% of the time
Mobic nonsteroidal anti-inflammatory drug 11 Members 90% of the time
Dapsone antiinfective and immunosuppressive agent. 11 Members 73% of the time
Lexapro selective serotonin reuptake inhibitor or SSRI. (antidepressants) 10 Members 100% of the time
Topamax anticonvulsant drug used to treat epilepsy... 10 Members 100% of the time
Aspirin 9 Members 88% of the time
Tramadol opioid analgesic, 9 Members 67% of the time
Cytoxan Cyclophosphamide (chemo).. 9 Members 75% of the time
Lasix Furosemide diuretic for edema/ congestive heart failure 8 Members 100% of the time
Positive Thinking 8 Members 100% of the time
Support from Friends & Family 8 Members 100% of the time
Celebrex non-steroidal anti-inflammatory drug (NSAID) 193 Members helps: 58% of the time
Cellcept immunosuppresant drug used to prevent rejection of ogran transplants... 171 Members helps: 83%
of the time
Methotrexate MTX, amethopterin, 137 Members helps: 73% of the time
Medrol Methylprednisolone is a synthetic glucocorticoid 52 Members helps: 82% of the time
Azathioprine chemotherapy drug 51 Members helps: 69% of the time
Azathioprine chemotherapy drug 50 Members helps: 68% of the time
Cyclophosphamide nitrogen mustard alkylating agent, 35 Members helps: 71% of the time
Prayer 30 Members helps: 93% of the time
Rituxan Rituximab, MabThera®, 21 Members helps: 94% of the time
Coumadin anticoagulant 17 Members helps: 100% of the time [i have to insert here that my Uncle
nearly died because of coumadin]
Cyclosporine immunosuppressant drug widely used in organ transplants 17 Members helps: helps: 94%
of the time
Ibuprofen non-steroidal anti-inflammatory drug (NSAID). 16 Members helps: 88% [i have to
insert here that i was in love with Advil, but it nearly destroyed my kidneys because i was taking so
much of it for pain] of the time
Hydrocodone [vicodin] opioid 16 Members helps: 100% of the time
Ultram Tramadol opioid which is a centrally acting analgesic, 7 Members 100% of the time [note: cannot be taken with Paxil]
Laughter 7 Members 100% of the time
Morphine highly potent opiate analgesic drug 7 Members 100% of the time
Lipitor Atorvastatin A statin, used for lowering cholesterol...6 Members 100% of the time
Celexa Citalopram or nitalapram is an antidepressant drug 6 Members 100% of the time
Nexium Esomeprazole- proton pump inhibitor -reduces stomach acid... 6 Members 83% of the time
Fosamax Alendronate is a bisphosphonate drug used for osteoporosis 6 Members 100% of the time
Lisinopril (ACE) inhibitor(for high blood pressure) ... 6 Members 100% of the time
Feldene Piroxicam (is a non-steroidal anti-inflammatory 6 Members 83% of the time
Zoloft antidepressant 5 Members 80% of the time
Prevacid Lansoprazole lowers stomach acid. 5 Members 100% of the time
Oxycodone powerful and potentially addictive opioid 5 Members 100% of the time
Clonazepam benzodiazepine derivative. It is a highly potentanti... 5 Members 100% of the time
Cyclobenzaprine skeletal muscle relaxant and a central nervous system (CNS) depr... 5 Members 100% of the time
Elavil Amitriptyline hydrochloride is a tricyclic antidepressant drug. 5 Members 75% of the time
Cortisone (Injection) Steroid hormone. 5 Members 100% of the time
Vitamin D 5 Members 100% of the time
Sleep 5 Members 100% of the time
Calcium 5 Members 100% of the time
Enbrel Etanercept . recombinant human soluble tumor necrosis factor-alpha (TNFα) 5 Members 80%
of the time
Tylenol for relieving pain, reducing fever, 5 Members 80% of the time
Voltaren Diclofenac (marketed as Voltaren, Voltarol, Diclon, Dicloflex Difen, Difene, Cataflam... 5 Members 100%
of the time
Relafen Nabumetone is a non-steroidal anti-inflammatory drug 5 Members 100% of the time
Prilosec Omeprazole is a proton pump inhibitor -reduces stomach acid 4 Members 75% of the time
Physical Exercise 4 Members 100% of the time
Synthroid Levothyroxine is a synthetic form of thyroxine (thyroid hormone). 4 Members 100% of the time
Dextropropoxyphene Dextropropoxyphene is an analgesic in the opioid category. 4 Members 100% of the time
Gabapentin 4 Members 100%of the time
Meditation 4 Members 100% of the time
Zanaflex Tizanidine (Zanaflex) is a centrally acting a2-adrenergic agonist. 4 Members 100% of the time
Faith 4 Members 100% of the time
Anti-Inflammatory Diet 4 Members 100% of the time
Chiropractic Adjustment 4 Members 100% of the time
Hydroxychloroquine (Plaquenil) 4 Members 100% of the time
Cozaar Losartan is an angiotensin II receptor antagonist drug used mainly to treat high blood pressure 4 Members 100%
of the time
Toradol Toradol (ketorolac tromethamine) is a non-steroidal anti-inflammatory drug (NSAID) 4 Members 67%
of the time
Chemotherapy 3 Members 67% of the time
Psychotherapy 3 Members 100% of the time
Protonix Pantoprazole is a proton pump inhibitor drug used for reduction of stomach acid... 3 Members 100%
of the time
Zantac Ranitidine is a histamine H2-receptor antagonist that inhibits stomach acid productio... 3 Members 100%
of the time
Codeine opioid used for its analgesic, antitussive 3 Members 100% of the time
Acupuncture 3 Members 100% of the time
Indocin Indometacin or Indomethacin is a non-steroidal anti-inflammatory drug 3 Members 100%
of the time
Yoga 3 Members 100% of the time
Aciphex Rabeprazole is a proton pump inhibitor(reduces stomach acid) 3 Members 100% of the time
Humira Adalimumab (Humira�) is the third TNF antagonist (after infliximab and etanercep... 3 Members 100%
of the time
Arava for R.A. 3 Members 100% of the time
Fish Oil 3 Members 100% of the time
Azulfidine Sulfasalazine is a sulfa drug 3 Members 50% of the time
Daypro Oxaprozin nonnarcotic, nonsteroidal anti-inflammatory drug ... 3 Members 67% of the time
Clonidine for high blood pressure 3 Members 100% of the time
Robaxin Methocarbamol is a central muscle relaxant 3 Members 100% of the time
Heat 3 Members 100% of the time
Paxil Paroxetine or paroxetine hydrochloride - antidepressant 2 Members 100% of the time
Wellbutrin Bupropion (amfebutamone) (Zyban) is an antidepressant 2 Members 100% of the time
Effexor Venlafaxine hydrochloride antidepressants2 Members 100% of the time
Vioxx Rofecoxib is a nonsteroidal anti-inflammatory drug (NSAID) 2 Members 50% of the time
Atenolol beta blocker, 2 Members 100% of the time
Norvasc calcium channel blocker used as an anti-hypertensive 2 Members 100% of the time
Love 2 Members 100% of the time
Ativan Lorazepam -anti anxiety 2 Members 100% of the time
Zyrtec Cetirizine hydrochloride for allergies, hay fever... 2 Members 100% of the time
Potassium 2 Members 100% of the time
Trazodone psychoactive compound with sedative, anxiolytic, and antidepressant ... 2 Members 100% of the time
Doxycycline antibiotic 2 Members 100% of the time
Writing 2 Members 100% of the time
Massage 2 Members 100% of the time
Relaxation 100% of the time
Solumedrol adrenocortical steroid, methylprednisolone 2 Members 100% of the time
Lovenox Enoxaparin is a low molecular weight heparin manufactured 2 Members 100% of the time
Valerian Valeriana officinalis, Valerianaceae) is a hardy perennial flowering plant, 2 Members 100% of the time
Gluten Free Diet 2 Members 100% of the time
Holistic Health 2 Members 100% of the time
Education 2 Members 100% of the time
Provigil Modafinil Vigil Modalert 2 Members 100% of the time
Art 2 Members 100% of the time
Bactrim DS antibiotic 2 Members 100% of the time
Flexeril Cyclobenzaprine skeletal muscle relaxant 2 Members 100% of the time
TENS A Transcutaneous Electrical Nerve Stimulator 2 Members 100% of the time
Lodine Etodolac 2 Members 50% of the time
Procardia XL Nifedipine (brand name Adalat, Nifedical, and Procardia) for high BP 2 Members 100%
of the time
Rozerem Ramelteon, 2 Members 100% of the time
Music 2 Members 50% of the time
Pets 2 Members 50% of the time
Pain Management Clinic 2 Members 100% of the time
Trental Trental (pentoxifylline) to treat intermittent claudication 2 Members 100% of the time
Keeping Busy 2 Members 50% of the time
Clinoril Clinoril (sulindac) is a non-steroidal anti-inflammatory 2 Members 100% of the time
Walking 2 Members 100% of the time
Salagen Salagen (pilocarpine) used to treat dry mouth (xerostomia). 2 Members 100% of the time
Prozac Fluoxetine Hydrochloride is an antidepressant 1 Member 100% of the time
Claritin Loratadine to treatallergies. Read Reviews 1 Member 100% of the time
Physical Therapy 1 Member
Melatonin 1 Member 100% of the time
Ambien Zolpidem insomnia 1 Member 100% of the time
Valium Diazepam (Stesolid, Seduxen, Bosaurin and Apozepam... 1 Member 100% of the time
Ramipril (Tritace or Altace) is (ACE) inhibitor (for high BP)... 1 Member
Carisoprodol skeletal muscle relaxant 1 Member 100% of the time
Hydrocortisone Synthetic cortisol, 1 Member 100% of the time
Running 1 Member 100% of the time
Metoprolol beta1 receptor blocker 1 Member 100% of the time
Carvedilol non-selective beta blocker 100% of the time
Crying 1 Member 100% of the time
Depakote (calproate semisodium or divalproex sodium) 1 Member
Baclofen Baclofen (Kemstro® and Lioresal®) 1 Member 100% of the time
Keppra Levetiracetam is an anticonvulsant medication 1 Member 100%
of the time
Allopurinol used to treat gout. 1 Member 100% of the time
IVIG Intravenous immunoglobulin (IVIG) is a blood product 1 Member 100% of the time
Lunesta Eszopiclone,(sleep aid) 1 Member 100% of the time
Sonata Zaleplon (Starnoc®) sleep aid 1 Member 100% of the time
Imitrex Sumatriptan (Imigran,Imigran Recovery ) is a triptan drug 1 Member 100% of the time
Chloroquine anti-malarial. 1 Member 100% of the time
Corticosteroids(see also prednisone) 1 Member 0% of the time
Humex 100% of the time
Aqua Therapy 1 Member 100% of the time
Eating Healthier Foods 1 Member 100% of the time
Lamictal (lamotrigine) anticonvulsant 1 Member 100% of the time
Orthopedic Brace 1 Member 100% of the time
Marijuana 1 Member 100% of the time
Sunday, April 27, 2008
results of lupus survey
I set up a survey about lupus on surveymonkey.com, with a limit of 100 respondents.
Well, the results are in.
First of all, I sent the results to my husband. It
really hit home with him, after reading everyone's
comments, about how important it is to rest, sleep,
and not have too much stress. he let me off the hook
for a big family gathering today in Yonkers because of
this, and I was able to get the sleep I needed
instead. So I think the survey results might be a
helpful tool in convincing other family members of the
importance of pacing ourselves, and the reality of
this illness.
1) Age of diagnosis: this pretty much confirms
everything you read in the official books, that the
illness strikes largely folks between 20-40, though
people as young a newborn and as old as 60 can still
be diagnosed.
Age of diagnosis:
<15 2.0% 2
15-20 13.0% 13
21-25 15.0% 15
26-30 8.0% 8
31-35 15.0% 15
36-40 13.0% 13
41-45 12.0% 12
46-50 10.0% 10
51-55 6.0% 6
56-60 4.0% 4
61-65 2.0% 2
66-70 0.0% 0
2) how long since diagnosis
less than 6 months 24.0% 24
6-12 months 10.0% 10
1-2 years 11.0% 11
2-5 years 20.0% 20
5-10 years 19.0% 19
10-15 years 10.0% 10
more than 15 years 6.0% 6
3) symptoms experienced:
Though some symptoms were more prevalent thatothers,
every symptom was experience by more than one person,
so no one is alone is their experiences.
I probably should have asked gender (sorry about all
the ovary, breast and period questions, guys!)
most common to least:
Achy joints / arthralgia 92.9% 92
Exhaustion over little to nothing 89.9% 89
Arthritis / swollen joints 85.9% 85
Prolonged or extreme fatigue 79.8% 79
confusion/ forgetfulness 78.8% 78
painful/ swollen joints 77.8% 77
Sun or light sensitivity / photosensitivity 72.7% 72
headaches 67.7% 67
dry skin 66.7% 66
anxiety 66.7% 66
Raynaud's phenomenon / fingers turning white and/or
blue in the cold 65.7% 65
Easily depressed 61.6% 61
fever 63.6% 63
weakness of muscles 61.6% 61
Mouth or nose ulcers 60.6% 60
Hair loss 57.6% 57
Butterfly-shaped rash across the cheeks and nose 57.6%
57
Chest pain and breathing problems 57.6% 57
bruises 57.6% 57
Sores in mouth/nose? 54.5% 54
muscle cramps 53.5% 53
migraines 53.5% 53
Emotional swings before, during or after the period
50.5% 50
Moody 51.5% 51
neuropathy (nerve pain) 49.5% 49
Skin Rashes 48.5% 48
sometimes you feel fine 46.5% 46
fibromyalgia 46.5% 46
Allergies 42.4% 42
bladder/ urinary tract/ kidney infections 42.4% 42
Pain in the chest on deep breathing / pleurisy 42.4%
42
poor appetite 37.4% 37
diarrhea 39.4% 39
visual disturbances 39.4% 39
Malar rash 37.4% 37
anemia 37.4% 37
Other rashes 36.4% 36
lesions on skin 35.4% 35
sinus infections 33.3% 33
thrush/ yeast infection 30.3% 30
hives 27.3% 27
Painful Periods 26.3% 26
Heavy Periods 28.3% 28
Kidney Involvement 25.3% 25
Abnormal blood clotting problems 27.3% 27
food allergies 24.2% 24
Irregular periods 24.2% 24
frequent bronchitis 22.2% 22
Ovarian Cysts 22.2% 22
sinusitis 21.2% 21
other cysts 12.1% 12
Dense breast tissue 12.1% 12
Seizures 11.1% 11
Breast Cysts 10.1% 10
Breast lumps or other breast complications 10.1% 10
Pituitary problems 7.1% 7
stroke 9.1% 9
congestive heart failure 3.0% 3
other symptoms:
-nonfunctioning gallbladder
-stomach infection (Helicobacter pylori), Otitis Media
-frustration/anger
-rib pain
-frequent sore throats
-mouth ulcers/vaginal ulcers
-muscle weakness
-To varied to mention
-double vision, tinnitis,cough syncopy,
-Low Blood Pressure and Temperature until I run a
fever
-irisitis - inflamation of the muscle around the
cornea
-dizziness/vertigo
-pericardial effusion
-Hearing loss
- irregular and slowing heart rate/pacemaker implant
4) time between 1st lupus Dr. visit and diagnosis:
less than 3 months 26.5% 26
that is encouraging to me- maybe people are getting
diganosed more quickly now that they used to be.
3-6 months 9.2% 9
6-9 months 8.2% 8
9months-1 year 12.2% 12
12-18 months 8.2% 8
18-24 months 3.1% 3
longer than 2 years 32.7% 32
this is disturbing! the kind of thing that makes us
feel like hypochondriacs, which can result in our not
going to the doctor soon enough when things are quite
serious.
5) which medical treatments have you been on for
lupus?
Not surpisingly, Prednisone and plaquenil are king. it seems Drs
are moving toward plaquenil to avoid using prednisone,
which we all know is extremely effective but awful
long-term (I still want it as my first option in a
flare, because it works! and then I want to be off it
within a year, because it sucks! talk about a
love/hate relationship). I probably should have lumped
antidepressants into one question instead of listing
specific ones, because that is what i did with the
blood pressure meds.. and clearly from the large
number of "other" there were some major meds I forgot
to list as options, specifically methotrexate,imuran,
NSAIDs, muscle relaxers. the survey results regarding treaments on dailystrength dot org, were also very
revealing in that there are so many treatment options
available to us.
most popular:
placquenil 89.2% 83
prednisone 73.1% 68
vicodin 29.0% 27
aspirin 24.7% 23
blood pressure meds 36.6% 34
chemotherapy 19.4% 18
IV prednisone 18.3% 17
cellcept 17.2% 16
neurontin 17.2% 16
wellbutrin 15.1% 14
lyrica 15.1% 14
percacet 14.0% 13
paxil 12.9% 12
prozac 9.7% 9
transfusions 8.6% 8
Procrit 3.2% 3
Others:
- rituxan
- Celebrex & Norflex
- diuretic, singulair, zocor
- quinine
- Fiorocet
- Methatrexare,Oxtcontin,Zoloft,Muscle relaxer
(skeleton)
- lortab
- Artrotec Amitriptyline co-codamol short courses of
prednisone. all in Ireland so may be different names
- zoloft, fludrocortisone,cimetidine
- lamictal, zonegrain, effexor xr, evoxac,
- methotrexate
- Salgen for Sjogrens and Effexor for depression and
pain
- imuran
-. Amitriptaline 10mg
- Etodolac and Lexapro
- enbrel
- minocin
- MTX
-All the Nsaids, now on Ibuprophen, also on Cymbalta
now for nerve pain and depression
-mobic, ibuprofen, Celebrex, darvoset, and a bunch of
different NASID's I can't remember them all.
- Aggrenox (blood thinner) due to APAS
- Zoloft and Klonopin
- imuran
- warfarin
- Cymbalta,Lortab,Isosorbide(for heart)
- Imuran, methotrexate, amitryptyline
- sodium bicarb for kidneys...& it looks like an iron
supplement (just diagnosed with anemia, waiting on
another blood test)
- Naproxen
- atenolol,tolfenamic acid
-amitryptiline/nortryptiline and tramadol for pain,
meloxicam for inflammation
-Tramadol
-just dx this week, so nothing yet
- imuran, mtx, rituxan
-blood pressure meds, migraine meds
- migraine meds, phenegren
-Cymbalta, Allegra, DHEA
-Kratom (herbal)
-gold salts for RA, Potassium, Iron, Calcium for
nutrient losses
A couple people commented that their doctors are not helping them manage their pain. I have experienced this as well, and may include a question about this on a future survey.
6) other diganosis?
I was a little concerned by therse results that the
osteoporosis and diabetes might be prednisone related.
i probably should have listed all autoimmune diseases
(incl RA) as well as migraines and asthma. anyone know
what APS or umctd are?
i think the number of us with depression and anxiety
is normal, given not just being diagnosis with a
chronic illness, but the lack of understanding and
even stigma- the social crap that comes along with it,
as well as the financial drain, and having to redefine
ourselves as we are no longer capable of doing some
things we used to do.
raynaud's 59.3% 51
depression 53.5% 46
anxiety 47.7% 41
fibromyalgia 45.3% 39
sjogren's 36.0% 31
osteoporosis 14.0% 12
crohn's 5.8% 5
diabetes 5.8% 5
cancer 4.7% 4
scleroderma 3.5% 3
others not listed:
- aps
- chronic renal failure, asthma, SLE, hypertension,
cholesteremia
- Endometriosis
- Neuropathy,Disk Disease,
-mixed connective tissue
-allergies, asmtha, possible MS
- grave's and celiac's
- umctd
-osteoarthritis, Degenerative disc, COPD, pulmanary
fibrosis, migrane syndrome
- Arthritis...not sure which type and Diabetes w/
insulin(but not a true Type 1
- polymyositis, MCTD, hypothyroidism
- Graves
- migraine, chronic fatigue, endometriosis
- RA
- Thyroid Disease
- pretty sure fibromyalgia - just not yet dx
- Mixed Connective tissue disease
- interstitial lung disease
- IBS
- Hughs Syndrome
- brain tumor
- Chronic Kidney Disease stage IV, Interstatial
nephritis (forgive the spelling)
- none diagnosed
- PKD
- endometriosis, mitral valve prolapse, pulmonary
valve prolapse
-vasculitis, peripheral neuropathy, APS, RA
- RA
- Hypermobility Syndrome
-Rheumatoid Arthritis, Congestive heart failure,
Kidney disease
7) do you think any of these things might have
contributed to your illness?
Stress is king here. you all brought up some
interesting culprits in the "other" section, such as
too much antibiotic treatment, tanning beds,
pregnancies. I should have also listed "genetics."
most popular:
stressful working conditions 66.7% 44
repeated sunburns 39.4% 26
unhealthy relationships at home 30.3% 20
smoking 28.8% 19
drinking diet soda daily 21.2% 14
eating mostly packaged/ processed food 21.2% 14
excess salt/ sugar intake 19.7% 13
eating/ drinking nurtasweet (asparatame) 19.7% 13
sedentary lifestyle 16.7% 11
living near pollution source 6.1% 4
vaccines 9.1% 6
extensive dental work 9.1% 6
Sexually transmitted diseases 1.5% 1
others not listed:
-tanning beds
-Antibiotics - lack of enough digestive enzymes
-hereditary autoimmune diseases
-Family history
-Stressful Life--deaths in the family (3 within 2 1/2
years, husband was ill too
- dont know was under 10 years when first symptoms,
would have had a good healthy diet, no dental work, no
sunburns hey I live in Ireland. ha
-Having triplets and a husband who has been to Iraq
three times!
-bad genes
-i had kidney problems at birth, was jaundiced and my
mother recently told me that the hospital i was born
in was undergoing construction at the time.
-My problems began after having Hepatitis many years
ago
- Continuing to go to school with glandular fever /
excessive dieting / excessive exercise
- severe eating disorders in my youth
- skin type
- hormone treatments
- Possible PCB poisoning from childhood
-Since I have had this since early childhood, I have
no idea
-I have psychological problems (namely bipolar) that
I've had for years that seem to at least be aggravated
by lupus
8) Which of the following non-medical treatments have
you pursued?
most popular:
supplements 59.2% 42
diet modification 47.9% 34
journalling 39.4% 28
herbs 38.0% 27
meditation 33.8% 24
psychotherapy 32.4% 23
acupuncture 26.8% 19
food allergy testing 21.1% 15
Reiki 14.1% 10
detox therapies 11.3% 8
lymphatic massage 9.9% 7
bodytalk 5.6% 4
Qi Gong (Chi Gong) 4.2% 3
Tai Chi 4.2% 3
fasting 4.2% 3
cranioscral therapy 2.8% 2
chelation therapy 1.4% 1
biological dentistry 1.4% 1
others not listed:
- prayer
-massage, but not sure if lymphatic, jacuzzi for sore
muscles
-rolfing
-If covered by insurance, I'd try most of these
options!
-yoga
-chiropractor
-Seeking medical treatment
-I've begun a very all natural/organic diet that has
helped alot!
-Regular gentle exercise
-water aerobics
I found moSt interesting how popular journalling is! a
healthy outlet for all those feelings. I have done SO
much writing during these last 16 years of dealing
with lupus. it's not just me!
further i want to point out - someone said "if covered
by insurance i'd try all of these!"
you might be surprised what is covered by insurance.
my old insurance covered chiropractic (which i
eventually gave up on, but at least i only paid $7
co-pays to find that out), and my new insurance covers
acupuncture! some will cover massage if your Dr
prescribes it. so don't just assume it's not covered. And of course journalling is basically free. you can get spiral bound notebooks for 10 cents during back-to-school sales.
9) have you ever lost a job because of lupus?
I was fired 6.9% 5
I was laid off 2.8% 2
I had to cut back to part-time 26.4% 19
I continue to work full-time 31.9% 23
I was not employed at the time I became ill 31.9% 23
-I could not keep my job as they foun dout about my
disk disease..shortly after getting fired I found out
I had lupus and it was no doubt the cause of the pain
I was having everywhere.
- left job had no diagnosis at the time, but too
tired to function, medical field, could not take
chances
- I had to quit because of Sjogrens, and fibromyalgia
and MOSTLY EXHAUSTION 5 years ago
- other jobs, I have only took part time because of
exhaustion
- had to leave because of my health
-I had to go out on disability because I missed 60
days in one year
-I quit and went on disability
-Twice
I have to interject here, IT IS ILLEGAL TO FIRE
SOMEONE BECAUSE OF THEIR ILLNESS. YOU CAN SUE THEM.
Furthermore, DO NOT WAIT to apply to disability. the
longer you wait to apply, the lower your benefits will
be because your income is based on the previous 7
years' work record. Take it from someone who knows firsthand.
10) What have you found most effective in controlling
your symptoms?
#1 answer: rest, sleep, rest, sleep, rest!!!!!!!
- Therapy! It's great to have someone who has to
listen to you talk about everything that is going on
and takes you seriously.
- So far, the prednisone, with side effects. Also,
taking advil and pain meds when needed
- none
- Too early to say since I've only been diagnosed 1
week ago, but in the past few weeks I have trying to
adopt a very healthy and fresh diet, avoiding some of
the foods that are usual suspects in food
intolerances, such as dairy and wheat.
- Lots of rest
- Lots of rest, meditation and trying to keep stress
to a minimum also no alcohol or smoking really helps.
- So far, Prednisone is the only medication that
takes a flare away. I haven't been on Plaquenil long
enough to evaluate its effectiveness yet. Staying out
of the sun and trying to avoid being overworked and
overstressed helps but the latter is almost
impossible. I can barely keep working full time.
- acupuncture, prednisone, relaxation techniques
- Darvocette's, Ultram
- I was just given prednisone and it has helped me so
much. The inflammtion was making me have so much
swelling,pain and I was short of breathe..now I feel
better!
-avoid stress, try to have positive approach to the
stresses that do present themselves. try not to
concentrate on what I cant do but on what I can. pace
things rest frequently. meds as above when required.
hot baths. massage. some days nothing works..
-none
- still learning, natural lifestyle does help with my
sjogrens
-phase 3 belimumab study
- Resting and Sleeping a lot!
- Sleep, control stress, relaxation, no sun
-Keep out of warm sun
- limit stress, take meds as prescribed, hobbies,
stay involved in life, get back in some way
(volunteering)
- Lots of rest helps, and working straight days has
helped so I maintain a regular sleep pattern, this has
enable me to stabalize and control my fatigue in a
major way.
- staying on schedule for drugs and recognizing
symptoms early and ACTING on them. Not waiting because
we are crazy LOL
-I haven't really found any that I would say are
effective. 14yrs and I have not had a remission longer
than 2 good days in a row.
- Prednisone,Cellcept, Not to let toxic relationships
bother me.
- nothing!!!
-Not sure yet...still going thru 'the process'.
Placquenil made the most dramatic difference so far as
meds. I haven't been put on an effective pain relief
yet! My Rheumy has suggested a low dose of
Methotrexate to add to my mix of meds, just 2 wks ago,
to control my Arthritis pain and symptoms, but I'm not
sure that it will help...I think I just need more
adequate pain relief to relive my symptoms. I don't
want to go on Methotrexate or any of the 'damage
causing' meds unless I have too. I don't feel I'm at
that point and I think Dr's put us on THOSE drugs too
easily and too soon w/out understanding all of the
ramifications to us! I am going to look into
alternatives, altho money is ALWAYS an issue because
that option isn't covered by insurance.
-changing my diet, eliminating chemicals, yoga,
chemotherapy, sleep.
- Prednisone, naproxine
- not working anymore...
-Actually I have not been properly diagnosed yet. I
have signs and symptoms consistant with RA and Lupus
and could likely have both and a few other things as
well. I am planning to return to work soon.
- exercising whenever I can/remembering to pace
myself (I try!) being around positive people as much
as possible, plaquenil, vicodin - am starting on
methotrexate in 2 days. My counselor is helping me to
learn "body talk"
- Plaquenil has helped me more than anything.
Sometimes I think food plays a role too.
- Going to bed BEFORE I become exhausted to the point
that I can't go to sleep. Listening better to my body.
Rituxan treatment.
- diet control has been helpful
- I've just begun taking plaqunil and it seems to be
helping.
- I am still trying to find effective ways... I
really like the idea of getting help from other Lupus
patients...they have been there themselves vs. the
docs!
- diet control - I now see a Naturopath as well as my
regular lupus doctor at the hospital.
- Plaquenil made the biggest difference. Staying out
of sunlight and unfiltered fluorescent light is also
important. Rest when not working is essential. I've
had to let go of a lot of things - friendships,
hobbies, certain recreational activities.
- just taking notice of body changes, when i feel
good i do things and not over strach my activities.
-DHEA has hugely improved my quality of life. So have
the pain meds.
- I try not to feel sorry for myself mostly. I go
through periods of depression and I always feel worse
but when i accept it and just deal I feel a little
better.
- Getting enough sleep and not overtaxing my body.
- none as of yet :/
- Prednisone helped with the pain but other than that
all symptoms persist and new ones have appeared.
-The CellCept brought me back from the brink of total
kidney failure very quickly. Plaquenil has helped
immensely too. I walk often and rest often.
- taking medications regularly resting frequently
staying out of the sun wearing sunscreen every day
- I do not have control, I just go with the flow, and
my docs treat symptoms as they arise. I think this is
why I am still alive today, because they did not wait
for positive ANA's, they went with their gut.
-This is hard to answer. When multi-system
involvement occurs, I needed prednisone. Acupuncture,
whole foods, herbal medicine and chiropractic help me
manage lupus and my life. The hard meds are there for
severe flares and disease treatment.
- Resting when needed. Adjusting my diet and avoiding
direct sunlight.
- keeping healthy. my biggest problem at the moment is
light sensitivity...malor rash. Spf 70,makeup and a
hat dont prevent rshes on my face. soo very
frustrating.
Well, the results are in.
First of all, I sent the results to my husband. It
really hit home with him, after reading everyone's
comments, about how important it is to rest, sleep,
and not have too much stress. he let me off the hook
for a big family gathering today in Yonkers because of
this, and I was able to get the sleep I needed
instead. So I think the survey results might be a
helpful tool in convincing other family members of the
importance of pacing ourselves, and the reality of
this illness.
1) Age of diagnosis: this pretty much confirms
everything you read in the official books, that the
illness strikes largely folks between 20-40, though
people as young a newborn and as old as 60 can still
be diagnosed.
Age of diagnosis:
<15 2.0% 2
15-20 13.0% 13
21-25 15.0% 15
26-30 8.0% 8
31-35 15.0% 15
36-40 13.0% 13
41-45 12.0% 12
46-50 10.0% 10
51-55 6.0% 6
56-60 4.0% 4
61-65 2.0% 2
66-70 0.0% 0
2) how long since diagnosis
less than 6 months 24.0% 24
6-12 months 10.0% 10
1-2 years 11.0% 11
2-5 years 20.0% 20
5-10 years 19.0% 19
10-15 years 10.0% 10
more than 15 years 6.0% 6
3) symptoms experienced:
Though some symptoms were more prevalent thatothers,
every symptom was experience by more than one person,
so no one is alone is their experiences.
I probably should have asked gender (sorry about all
the ovary, breast and period questions, guys!)
most common to least:
Achy joints / arthralgia 92.9% 92
Exhaustion over little to nothing 89.9% 89
Arthritis / swollen joints 85.9% 85
Prolonged or extreme fatigue 79.8% 79
confusion/ forgetfulness 78.8% 78
painful/ swollen joints 77.8% 77
Sun or light sensitivity / photosensitivity 72.7% 72
headaches 67.7% 67
dry skin 66.7% 66
anxiety 66.7% 66
Raynaud's phenomenon / fingers turning white and/or
blue in the cold 65.7% 65
Easily depressed 61.6% 61
fever 63.6% 63
weakness of muscles 61.6% 61
Mouth or nose ulcers 60.6% 60
Hair loss 57.6% 57
Butterfly-shaped rash across the cheeks and nose 57.6%
57
Chest pain and breathing problems 57.6% 57
bruises 57.6% 57
Sores in mouth/nose? 54.5% 54
muscle cramps 53.5% 53
migraines 53.5% 53
Emotional swings before, during or after the period
50.5% 50
Moody 51.5% 51
neuropathy (nerve pain) 49.5% 49
Skin Rashes 48.5% 48
sometimes you feel fine 46.5% 46
fibromyalgia 46.5% 46
Allergies 42.4% 42
bladder/ urinary tract/ kidney infections 42.4% 42
Pain in the chest on deep breathing / pleurisy 42.4%
42
poor appetite 37.4% 37
diarrhea 39.4% 39
visual disturbances 39.4% 39
Malar rash 37.4% 37
anemia 37.4% 37
Other rashes 36.4% 36
lesions on skin 35.4% 35
sinus infections 33.3% 33
thrush/ yeast infection 30.3% 30
hives 27.3% 27
Painful Periods 26.3% 26
Heavy Periods 28.3% 28
Kidney Involvement 25.3% 25
Abnormal blood clotting problems 27.3% 27
food allergies 24.2% 24
Irregular periods 24.2% 24
frequent bronchitis 22.2% 22
Ovarian Cysts 22.2% 22
sinusitis 21.2% 21
other cysts 12.1% 12
Dense breast tissue 12.1% 12
Seizures 11.1% 11
Breast Cysts 10.1% 10
Breast lumps or other breast complications 10.1% 10
Pituitary problems 7.1% 7
stroke 9.1% 9
congestive heart failure 3.0% 3
other symptoms:
-nonfunctioning gallbladder
-stomach infection (Helicobacter pylori), Otitis Media
-frustration/anger
-rib pain
-frequent sore throats
-mouth ulcers/vaginal ulcers
-muscle weakness
-To varied to mention
-double vision, tinnitis,cough syncopy,
-Low Blood Pressure and Temperature until I run a
fever
-irisitis - inflamation of the muscle around the
cornea
-dizziness/vertigo
-pericardial effusion
-Hearing loss
- irregular and slowing heart rate/pacemaker implant
4) time between 1st lupus Dr. visit and diagnosis:
less than 3 months 26.5% 26
that is encouraging to me- maybe people are getting
diganosed more quickly now that they used to be.
3-6 months 9.2% 9
6-9 months 8.2% 8
9months-1 year 12.2% 12
12-18 months 8.2% 8
18-24 months 3.1% 3
longer than 2 years 32.7% 32
this is disturbing! the kind of thing that makes us
feel like hypochondriacs, which can result in our not
going to the doctor soon enough when things are quite
serious.
5) which medical treatments have you been on for
lupus?
Not surpisingly, Prednisone and plaquenil are king. it seems Drs
are moving toward plaquenil to avoid using prednisone,
which we all know is extremely effective but awful
long-term (I still want it as my first option in a
flare, because it works! and then I want to be off it
within a year, because it sucks! talk about a
love/hate relationship). I probably should have lumped
antidepressants into one question instead of listing
specific ones, because that is what i did with the
blood pressure meds.. and clearly from the large
number of "other" there were some major meds I forgot
to list as options, specifically methotrexate,imuran,
NSAIDs, muscle relaxers. the survey results regarding treaments on dailystrength dot org, were also very
revealing in that there are so many treatment options
available to us.
most popular:
placquenil 89.2% 83
prednisone 73.1% 68
vicodin 29.0% 27
aspirin 24.7% 23
blood pressure meds 36.6% 34
chemotherapy 19.4% 18
IV prednisone 18.3% 17
cellcept 17.2% 16
neurontin 17.2% 16
wellbutrin 15.1% 14
lyrica 15.1% 14
percacet 14.0% 13
paxil 12.9% 12
prozac 9.7% 9
transfusions 8.6% 8
Procrit 3.2% 3
Others:
- rituxan
- Celebrex & Norflex
- diuretic, singulair, zocor
- quinine
- Fiorocet
- Methatrexare,Oxtcontin,Zoloft,Muscle relaxer
(skeleton)
- lortab
- Artrotec Amitriptyline co-codamol short courses of
prednisone. all in Ireland so may be different names
- zoloft, fludrocortisone,cimetidine
- lamictal, zonegrain, effexor xr, evoxac,
- methotrexate
- Salgen for Sjogrens and Effexor for depression and
pain
- imuran
-. Amitriptaline 10mg
- Etodolac and Lexapro
- enbrel
- minocin
- MTX
-All the Nsaids, now on Ibuprophen, also on Cymbalta
now for nerve pain and depression
-mobic, ibuprofen, Celebrex, darvoset, and a bunch of
different NASID's I can't remember them all.
- Aggrenox (blood thinner) due to APAS
- Zoloft and Klonopin
- imuran
- warfarin
- Cymbalta,Lortab,Isosorbide(for heart)
- Imuran, methotrexate, amitryptyline
- sodium bicarb for kidneys...& it looks like an iron
supplement (just diagnosed with anemia, waiting on
another blood test)
- Naproxen
- atenolol,tolfenamic acid
-amitryptiline/nortryptiline and tramadol for pain,
meloxicam for inflammation
-Tramadol
-just dx this week, so nothing yet
- imuran, mtx, rituxan
-blood pressure meds, migraine meds
- migraine meds, phenegren
-Cymbalta, Allegra, DHEA
-Kratom (herbal)
-gold salts for RA, Potassium, Iron, Calcium for
nutrient losses
A couple people commented that their doctors are not helping them manage their pain. I have experienced this as well, and may include a question about this on a future survey.
6) other diganosis?
I was a little concerned by therse results that the
osteoporosis and diabetes might be prednisone related.
i probably should have listed all autoimmune diseases
(incl RA) as well as migraines and asthma. anyone know
what APS or umctd are?
i think the number of us with depression and anxiety
is normal, given not just being diagnosis with a
chronic illness, but the lack of understanding and
even stigma- the social crap that comes along with it,
as well as the financial drain, and having to redefine
ourselves as we are no longer capable of doing some
things we used to do.
raynaud's 59.3% 51
depression 53.5% 46
anxiety 47.7% 41
fibromyalgia 45.3% 39
sjogren's 36.0% 31
osteoporosis 14.0% 12
crohn's 5.8% 5
diabetes 5.8% 5
cancer 4.7% 4
scleroderma 3.5% 3
others not listed:
- aps
- chronic renal failure, asthma, SLE, hypertension,
cholesteremia
- Endometriosis
- Neuropathy,Disk Disease,
-mixed connective tissue
-allergies, asmtha, possible MS
- grave's and celiac's
- umctd
-osteoarthritis, Degenerative disc, COPD, pulmanary
fibrosis, migrane syndrome
- Arthritis...not sure which type and Diabetes w/
insulin(but not a true Type 1
- polymyositis, MCTD, hypothyroidism
- Graves
- migraine, chronic fatigue, endometriosis
- RA
- Thyroid Disease
- pretty sure fibromyalgia - just not yet dx
- Mixed Connective tissue disease
- interstitial lung disease
- IBS
- Hughs Syndrome
- brain tumor
- Chronic Kidney Disease stage IV, Interstatial
nephritis (forgive the spelling)
- none diagnosed
- PKD
- endometriosis, mitral valve prolapse, pulmonary
valve prolapse
-vasculitis, peripheral neuropathy, APS, RA
- RA
- Hypermobility Syndrome
-Rheumatoid Arthritis, Congestive heart failure,
Kidney disease
7) do you think any of these things might have
contributed to your illness?
Stress is king here. you all brought up some
interesting culprits in the "other" section, such as
too much antibiotic treatment, tanning beds,
pregnancies. I should have also listed "genetics."
most popular:
stressful working conditions 66.7% 44
repeated sunburns 39.4% 26
unhealthy relationships at home 30.3% 20
smoking 28.8% 19
drinking diet soda daily 21.2% 14
eating mostly packaged/ processed food 21.2% 14
excess salt/ sugar intake 19.7% 13
eating/ drinking nurtasweet (asparatame) 19.7% 13
sedentary lifestyle 16.7% 11
living near pollution source 6.1% 4
vaccines 9.1% 6
extensive dental work 9.1% 6
Sexually transmitted diseases 1.5% 1
others not listed:
-tanning beds
-Antibiotics - lack of enough digestive enzymes
-hereditary autoimmune diseases
-Family history
-Stressful Life--deaths in the family (3 within 2 1/2
years, husband was ill too
- dont know was under 10 years when first symptoms,
would have had a good healthy diet, no dental work, no
sunburns hey I live in Ireland. ha
-Having triplets and a husband who has been to Iraq
three times!
-bad genes
-i had kidney problems at birth, was jaundiced and my
mother recently told me that the hospital i was born
in was undergoing construction at the time.
-My problems began after having Hepatitis many years
ago
- Continuing to go to school with glandular fever /
excessive dieting / excessive exercise
- severe eating disorders in my youth
- skin type
- hormone treatments
- Possible PCB poisoning from childhood
-Since I have had this since early childhood, I have
no idea
-I have psychological problems (namely bipolar) that
I've had for years that seem to at least be aggravated
by lupus
8) Which of the following non-medical treatments have
you pursued?
most popular:
supplements 59.2% 42
diet modification 47.9% 34
journalling 39.4% 28
herbs 38.0% 27
meditation 33.8% 24
psychotherapy 32.4% 23
acupuncture 26.8% 19
food allergy testing 21.1% 15
Reiki 14.1% 10
detox therapies 11.3% 8
lymphatic massage 9.9% 7
bodytalk 5.6% 4
Qi Gong (Chi Gong) 4.2% 3
Tai Chi 4.2% 3
fasting 4.2% 3
cranioscral therapy 2.8% 2
chelation therapy 1.4% 1
biological dentistry 1.4% 1
others not listed:
- prayer
-massage, but not sure if lymphatic, jacuzzi for sore
muscles
-rolfing
-If covered by insurance, I'd try most of these
options!
-yoga
-chiropractor
-Seeking medical treatment
-I've begun a very all natural/organic diet that has
helped alot!
-Regular gentle exercise
-water aerobics
I found moSt interesting how popular journalling is! a
healthy outlet for all those feelings. I have done SO
much writing during these last 16 years of dealing
with lupus. it's not just me!
further i want to point out - someone said "if covered
by insurance i'd try all of these!"
you might be surprised what is covered by insurance.
my old insurance covered chiropractic (which i
eventually gave up on, but at least i only paid $7
co-pays to find that out), and my new insurance covers
acupuncture! some will cover massage if your Dr
prescribes it. so don't just assume it's not covered. And of course journalling is basically free. you can get spiral bound notebooks for 10 cents during back-to-school sales.
9) have you ever lost a job because of lupus?
I was fired 6.9% 5
I was laid off 2.8% 2
I had to cut back to part-time 26.4% 19
I continue to work full-time 31.9% 23
I was not employed at the time I became ill 31.9% 23
-I could not keep my job as they foun dout about my
disk disease..shortly after getting fired I found out
I had lupus and it was no doubt the cause of the pain
I was having everywhere.
- left job had no diagnosis at the time, but too
tired to function, medical field, could not take
chances
- I had to quit because of Sjogrens, and fibromyalgia
and MOSTLY EXHAUSTION 5 years ago
- other jobs, I have only took part time because of
exhaustion
- had to leave because of my health
-I had to go out on disability because I missed 60
days in one year
-I quit and went on disability
-Twice
I have to interject here, IT IS ILLEGAL TO FIRE
SOMEONE BECAUSE OF THEIR ILLNESS. YOU CAN SUE THEM.
Furthermore, DO NOT WAIT to apply to disability. the
longer you wait to apply, the lower your benefits will
be because your income is based on the previous 7
years' work record. Take it from someone who knows firsthand.
10) What have you found most effective in controlling
your symptoms?
#1 answer: rest, sleep, rest, sleep, rest!!!!!!!
- Therapy! It's great to have someone who has to
listen to you talk about everything that is going on
and takes you seriously.
- So far, the prednisone, with side effects. Also,
taking advil and pain meds when needed
- none
- Too early to say since I've only been diagnosed 1
week ago, but in the past few weeks I have trying to
adopt a very healthy and fresh diet, avoiding some of
the foods that are usual suspects in food
intolerances, such as dairy and wheat.
- Lots of rest
- Lots of rest, meditation and trying to keep stress
to a minimum also no alcohol or smoking really helps.
- So far, Prednisone is the only medication that
takes a flare away. I haven't been on Plaquenil long
enough to evaluate its effectiveness yet. Staying out
of the sun and trying to avoid being overworked and
overstressed helps but the latter is almost
impossible. I can barely keep working full time.
- acupuncture, prednisone, relaxation techniques
- Darvocette's, Ultram
- I was just given prednisone and it has helped me so
much. The inflammtion was making me have so much
swelling,pain and I was short of breathe..now I feel
better!
-avoid stress, try to have positive approach to the
stresses that do present themselves. try not to
concentrate on what I cant do but on what I can. pace
things rest frequently. meds as above when required.
hot baths. massage. some days nothing works..
-none
- still learning, natural lifestyle does help with my
sjogrens
-phase 3 belimumab study
- Resting and Sleeping a lot!
- Sleep, control stress, relaxation, no sun
-Keep out of warm sun
- limit stress, take meds as prescribed, hobbies,
stay involved in life, get back in some way
(volunteering)
- Lots of rest helps, and working straight days has
helped so I maintain a regular sleep pattern, this has
enable me to stabalize and control my fatigue in a
major way.
- staying on schedule for drugs and recognizing
symptoms early and ACTING on them. Not waiting because
we are crazy LOL
-I haven't really found any that I would say are
effective. 14yrs and I have not had a remission longer
than 2 good days in a row.
- Prednisone,Cellcept, Not to let toxic relationships
bother me.
- nothing!!!
-Not sure yet...still going thru 'the process'.
Placquenil made the most dramatic difference so far as
meds. I haven't been put on an effective pain relief
yet! My Rheumy has suggested a low dose of
Methotrexate to add to my mix of meds, just 2 wks ago,
to control my Arthritis pain and symptoms, but I'm not
sure that it will help...I think I just need more
adequate pain relief to relive my symptoms. I don't
want to go on Methotrexate or any of the 'damage
causing' meds unless I have too. I don't feel I'm at
that point and I think Dr's put us on THOSE drugs too
easily and too soon w/out understanding all of the
ramifications to us! I am going to look into
alternatives, altho money is ALWAYS an issue because
that option isn't covered by insurance.
-changing my diet, eliminating chemicals, yoga,
chemotherapy, sleep.
- Prednisone, naproxine
- not working anymore...
-Actually I have not been properly diagnosed yet. I
have signs and symptoms consistant with RA and Lupus
and could likely have both and a few other things as
well. I am planning to return to work soon.
- exercising whenever I can/remembering to pace
myself (I try!) being around positive people as much
as possible, plaquenil, vicodin - am starting on
methotrexate in 2 days. My counselor is helping me to
learn "body talk"
- Plaquenil has helped me more than anything.
Sometimes I think food plays a role too.
- Going to bed BEFORE I become exhausted to the point
that I can't go to sleep. Listening better to my body.
Rituxan treatment.
- diet control has been helpful
- I've just begun taking plaqunil and it seems to be
helping.
- I am still trying to find effective ways... I
really like the idea of getting help from other Lupus
patients...they have been there themselves vs. the
docs!
- diet control - I now see a Naturopath as well as my
regular lupus doctor at the hospital.
- Plaquenil made the biggest difference. Staying out
of sunlight and unfiltered fluorescent light is also
important. Rest when not working is essential. I've
had to let go of a lot of things - friendships,
hobbies, certain recreational activities.
- just taking notice of body changes, when i feel
good i do things and not over strach my activities.
-DHEA has hugely improved my quality of life. So have
the pain meds.
- I try not to feel sorry for myself mostly. I go
through periods of depression and I always feel worse
but when i accept it and just deal I feel a little
better.
- Getting enough sleep and not overtaxing my body.
- none as of yet :/
- Prednisone helped with the pain but other than that
all symptoms persist and new ones have appeared.
-The CellCept brought me back from the brink of total
kidney failure very quickly. Plaquenil has helped
immensely too. I walk often and rest often.
- taking medications regularly resting frequently
staying out of the sun wearing sunscreen every day
- I do not have control, I just go with the flow, and
my docs treat symptoms as they arise. I think this is
why I am still alive today, because they did not wait
for positive ANA's, they went with their gut.
-This is hard to answer. When multi-system
involvement occurs, I needed prednisone. Acupuncture,
whole foods, herbal medicine and chiropractic help me
manage lupus and my life. The hard meds are there for
severe flares and disease treatment.
- Resting when needed. Adjusting my diet and avoiding
direct sunlight.
- keeping healthy. my biggest problem at the moment is
light sensitivity...malor rash. Spf 70,makeup and a
hat dont prevent rshes on my face. soo very
frustrating.
Friday, April 25, 2008
What *really* causes lupus?
I get so tired of the medical establishment blaming everything on genetics.
when the rate of autoimmune disease in developed countries (and *only* developed countries) triples in 3 decades, we've got something other than bad genes at play here. I think they either blame genes because they just don't have a better answer, or because they are so heavily influenced by the pharmaceutical industry (who funds the medical schools, then harangues and romances them with pharmaceutical reps and fancy vacations disguised as "speaking opportunities") that they are blind to any solution that puts the power back in the hands of the patient, such as diet change, supplementation, meditation, or moderate exercise.
Well, finally there is a book out there (I wish i'de written it!) called "The Autoimmune Epidemic."
I haven't bought it yet but i fully intend to, esp. after reading this interview with the author:
http://www.endfatigue-dev.com/health_articles_f-n/Immunity-the-autoimmune_epidemic.html
when the rate of autoimmune disease in developed countries (and *only* developed countries) triples in 3 decades, we've got something other than bad genes at play here. I think they either blame genes because they just don't have a better answer, or because they are so heavily influenced by the pharmaceutical industry (who funds the medical schools, then harangues and romances them with pharmaceutical reps and fancy vacations disguised as "speaking opportunities") that they are blind to any solution that puts the power back in the hands of the patient, such as diet change, supplementation, meditation, or moderate exercise.
Well, finally there is a book out there (I wish i'de written it!) called "The Autoimmune Epidemic."
I haven't bought it yet but i fully intend to, esp. after reading this interview with the author:
http://www.endfatigue-dev.com/health_articles_f-n/Immunity-the-autoimmune_epidemic.html
Monday, April 21, 2008
what's on *your* mind?
I created a little survey for lupus patients. wanna take it?
Click Here to take survey
Click Here to take survey
Sunday, April 20, 2008
So what's on Your Mind (Sorry i asked)
I got an MRI a few months ago. The rheumatologist really didn't say anything about the MRI results except "you have sinusistis" (duh, i have been blowing my nose for 15 years, ever since that first spring after I started taking prednisone) and "there is a cyst on your brain." (there's always something on my mind, but not usually literally) and "see you in 3 months" (I assume that last comment meant i'd live at least another 3 months).
I think maybe she said it was nothing to worry about, but then it's not her brain, so why should she be worried? Personally, I love my brain. It is my favorite part of me. The rest of me falls apart. sometimes I look good, even great (if i do say so myself), but most of the time I don't look as good as I would have if I didn't have lupus and a bunch of drugs in my system. I'm usually frustrated with my bloating face/ ankles and my thinning/ regrowing hair, and of cousre my extra 15 pounds or so. but my brain, it always works. I have a lot of fun with my brain. i would be very lonely without it.
On the other hand, there is this musician out there who has a cancerous brain tumor and he has been touring and making a living and doing just great for *years* past his death prognosis- it's like the big scare gave him a new lease on life. hasn't affected his congnitive abilities at all.
On yet another hand (3 hands- tough time finding shirts!), my aunt just died of brain cancer and did lose some cognitive function in the last 6 months. of course that could have been the drugs.
Well, as they say in 12-step, just for today i have a brain that works and a blog and a lupus listserv to type in my stream of consciousness to, who respond back with kindness and reciprocal playfulness. if i had never had an MRI i'd have never known about the cyst. and they aren't going to do anything about it anyway. so i need to learn to just let it go i suppose.
You know if i were a saint then making fun of my cyst would be SAC-religious.
maybe i misunderstood when someone said "put a sock in it."
(oh i thought "you said put a sac in it")
I could keep up with the puns, but not everyone is so *fluid* in English.
cyst... fluid...? oh never mind.
Normally I'd make these jokes with my hubby but i don't think i want to remind him there's this "thing" in my brain. But I figure if you're reading my blog, you probably have lupus and you can handle the topic. We all feel like health time bombs at some point.
from my listserv pals:
" Carla, let us know what that means. Did
you ask
for a-cyst-ance? .Let us know what it
means. You are in my thoughts. We need you. Jesse
>>>>>>>>>>>>
I think maybe she said it was nothing to worry about, but then it's not her brain, so why should she be worried? Personally, I love my brain. It is my favorite part of me. The rest of me falls apart. sometimes I look good, even great (if i do say so myself), but most of the time I don't look as good as I would have if I didn't have lupus and a bunch of drugs in my system. I'm usually frustrated with my bloating face/ ankles and my thinning/ regrowing hair, and of cousre my extra 15 pounds or so. but my brain, it always works. I have a lot of fun with my brain. i would be very lonely without it.
On the other hand, there is this musician out there who has a cancerous brain tumor and he has been touring and making a living and doing just great for *years* past his death prognosis- it's like the big scare gave him a new lease on life. hasn't affected his congnitive abilities at all.
On yet another hand (3 hands- tough time finding shirts!), my aunt just died of brain cancer and did lose some cognitive function in the last 6 months. of course that could have been the drugs.
Well, as they say in 12-step, just for today i have a brain that works and a blog and a lupus listserv to type in my stream of consciousness to, who respond back with kindness and reciprocal playfulness. if i had never had an MRI i'd have never known about the cyst. and they aren't going to do anything about it anyway. so i need to learn to just let it go i suppose.
You know if i were a saint then making fun of my cyst would be SAC-religious.
maybe i misunderstood when someone said "put a sock in it."
(oh i thought "you said put a sac in it")
I could keep up with the puns, but not everyone is so *fluid* in English.
cyst... fluid...? oh never mind.
Normally I'd make these jokes with my hubby but i don't think i want to remind him there's this "thing" in my brain. But I figure if you're reading my blog, you probably have lupus and you can handle the topic. We all feel like health time bombs at some point.
from my listserv pals:
" Carla, let us know what that means. Did
you ask
for a-cyst-ance? .Let us know what it
means. You are in my thoughts. We need you. Jesse
>>>>>>>>>>>>
Tuesday, April 15, 2008
Lupus envy
i've had people say all sorts of insulting things to me regarding my illness. "i wish had 6 weeks ot just lay in the bed and read."
if your life is so F***ed up that you wish you could have a stroke so you could lie around, then you need
to change your life, not take it out on someone who's already down! And for what it's worth, reading was very difficult for me right after the stroke. My eyes were doing all kinda weird stuff.
Some of my friends are on disability and anyone who knows this says things like "why don't you get a job like the rest of us?"
Humans are lazy. they would all love to get a "free check" in the mail for "doing nothing" just ask them if they want to pay the price to get that "free" check- a lifetime of avoiding the sun, in and out of hospitals and doctor's offices, huge medical bills, disfiguring medicines, and always waiting for the axe to fall, the kidneys to fail, the next stroke, the next weird symptom, the next tiem you can't enjoy going out because you're too tiered.
i lost a lot of weight in 2002 when i was very very sick. i had no butt and was aactually uncomfortable.
someone had the nerve to say "i wish i'd lose my appetite" What i wish i'd said? "i'll trade you 2
strokes, hair loss, and kidney failure for a fat ass!!!!"
When I first got sick, I had two people from the church I was going to at the time call me at different times. One of them informed me I was sick because I had some hidden sin in my life (and was being punished). A kinder soul informed me that I was sick because I was doing god's work and the devil was attacking me. Hmm. cant' be both now can it?
They were baffled that someone like me, who showed up to church 3 times a week, could ahve something so awful happen to them. I realized later they were saying these awful things because they wanted to somehow blame me for my illness- if somehow it was my own fault, then they could believe it wouldn't happen to them. Same stuff they do when a girl gets raped and they say she was "asking for it" because she had on a short skirt. Once I realized it was fear, not meanness, driving these people to say awful things, I could forgive them.
Other folks from the church were all pitching in to help this woman who was bedridden (pregnant, doctor's orders) and bringing her dinner every night (she had a husband. Meanwhile I was debilitated and almost no one came around.
Later, after I got back on my feet (and moved away, and left the church, which I hope I'd have had the good sense to do even if I hadn't moved away), I finally called one of the main church guys and asked them why they refused to help me when I was sick, but helped others. He said "You're still upset about that?" Of course i was- no one had acknowledged the hurt or even considered apologizing or explaining. He said "Well we figured you were doing that 'wacky' medicine." So I said "you mean you didn't approve of the medical treatment I was getting so you decided not to help me." He says "Well i wouldn't put that way." And I said "I'm sure you wouldn't!" Because that would make you despicable!
find some real-life face to face friends who aren't crazymakers, takers, blamers, haters. seek them out. They may not all be in the church... but they are out there. i found some for the first time in my life after my 2nd flare. this whole thing has been
a lesson for me in caring for myself.
love yourself and others will follow suit (or get left behind!)
if your life is so F***ed up that you wish you could have a stroke so you could lie around, then you need
to change your life, not take it out on someone who's already down! And for what it's worth, reading was very difficult for me right after the stroke. My eyes were doing all kinda weird stuff.
Some of my friends are on disability and anyone who knows this says things like "why don't you get a job like the rest of us?"
Humans are lazy. they would all love to get a "free check" in the mail for "doing nothing" just ask them if they want to pay the price to get that "free" check- a lifetime of avoiding the sun, in and out of hospitals and doctor's offices, huge medical bills, disfiguring medicines, and always waiting for the axe to fall, the kidneys to fail, the next stroke, the next weird symptom, the next tiem you can't enjoy going out because you're too tiered.
i lost a lot of weight in 2002 when i was very very sick. i had no butt and was aactually uncomfortable.
someone had the nerve to say "i wish i'd lose my appetite" What i wish i'd said? "i'll trade you 2
strokes, hair loss, and kidney failure for a fat ass!!!!"
When I first got sick, I had two people from the church I was going to at the time call me at different times. One of them informed me I was sick because I had some hidden sin in my life (and was being punished). A kinder soul informed me that I was sick because I was doing god's work and the devil was attacking me. Hmm. cant' be both now can it?
They were baffled that someone like me, who showed up to church 3 times a week, could ahve something so awful happen to them. I realized later they were saying these awful things because they wanted to somehow blame me for my illness- if somehow it was my own fault, then they could believe it wouldn't happen to them. Same stuff they do when a girl gets raped and they say she was "asking for it" because she had on a short skirt. Once I realized it was fear, not meanness, driving these people to say awful things, I could forgive them.
Other folks from the church were all pitching in to help this woman who was bedridden (pregnant, doctor's orders) and bringing her dinner every night (she had a husband. Meanwhile I was debilitated and almost no one came around.
Later, after I got back on my feet (and moved away, and left the church, which I hope I'd have had the good sense to do even if I hadn't moved away), I finally called one of the main church guys and asked them why they refused to help me when I was sick, but helped others. He said "You're still upset about that?" Of course i was- no one had acknowledged the hurt or even considered apologizing or explaining. He said "Well we figured you were doing that 'wacky' medicine." So I said "you mean you didn't approve of the medical treatment I was getting so you decided not to help me." He says "Well i wouldn't put that way." And I said "I'm sure you wouldn't!" Because that would make you despicable!
find some real-life face to face friends who aren't crazymakers, takers, blamers, haters. seek them out. They may not all be in the church... but they are out there. i found some for the first time in my life after my 2nd flare. this whole thing has been
a lesson for me in caring for myself.
love yourself and others will follow suit (or get left behind!)
My disease is worse than your disease
People around you, when you have a chronic illness, don't understand when you can't go to social outings 3 times a week because it's too tiring, or other things you have to opt out of, even though you would love to do them. the weird thing is, those of us with lupus don't even fully know our own limitations, because i don't know about everyone else, but mine change all the time. so maybe what i could do last time someone saw me, I can't do this time.
I've heard horror stories about husbands who are just monstrous when their wives develop lupus. One of them actually went to the doctor and asked to be tested for lupus himself. Another is a "recovering" addict who needs knee surgery and takes all his wife's pain meds, leaving her with none to manage her lupus pain! my husband is awesome, and i feel so lucky to have found someone who really loves me despite this stupid illness. we're newlyweds, BTW, 9 months now, so you *can* find love after lupus. i didn't think it was possible.
the one thing he doesn't understand is how loud noises and bright lights and other forms of overstimulation are upsetting to me and always lead to a migraine. i have to keep telling him to talk quieter. it's like i have a perpetual hangover! no one can ever really "get it" no matter how wonderful a human being they may be, unless they have suffered something very very similar for a long enough time that they don't forget what it is like. in other cultures, BTW, you cannot be a healer unless you have suffered. very different from our medical system, which is seriously lacking in empathy and compassion. but i suppose that's another story. sort of. i mean they can be really invalidating too. i had a doctor tell me once "it could be worse. you could have cancer."
I snapped. I said well at least if you have cancer you either get better or die! (as opposed to draggin around feeling like crap and popping pills for decades!). He caught me at my wit's end- what can i say. But i don't regret it one iota. Not because I think lupus is worse than cancer or cancer is worse than lupus, but i just think it's *so* wrong to play the "who's got it worse?" game. I don't think he could have picked a worse thing to say. He's lucky I'm too weak to strangle anyone.
Something from the bible that has stuck with me: “it is not wise to compare amongst yourselves.” For example, lupus can be much worse or much less severe than breast cancer. some cancer patients just have a lumpectomy; others have it travel to their lymph system and die a painful death. Some lupus patients have mild fatigue and rashes while others, like me, suffer kidney failure, migraines, pleurisy, high blood pressure, anemia, congestive heart failure, even a stroke during a flare- it can still be a deadly disease, and most who die from lupus die of heart failure. And getting lupus doesn't exclude you from getting cancer, or vice versa. I've met folks who have had both.
So, in getting out of the pity party and competition frames of mind, I think that gratitude is definitely a very powerful choice. when I am feeling really stinky sorry for myself because I can't do the things I'd like to and no one understands and this stupid thing is probably never going to go away (notice I said "probably" even after 16 years of this, I still have hope!) I make a gratitude list. it’s a real pick-me-upper!
I've heard horror stories about husbands who are just monstrous when their wives develop lupus. One of them actually went to the doctor and asked to be tested for lupus himself. Another is a "recovering" addict who needs knee surgery and takes all his wife's pain meds, leaving her with none to manage her lupus pain! my husband is awesome, and i feel so lucky to have found someone who really loves me despite this stupid illness. we're newlyweds, BTW, 9 months now, so you *can* find love after lupus. i didn't think it was possible.
the one thing he doesn't understand is how loud noises and bright lights and other forms of overstimulation are upsetting to me and always lead to a migraine. i have to keep telling him to talk quieter. it's like i have a perpetual hangover! no one can ever really "get it" no matter how wonderful a human being they may be, unless they have suffered something very very similar for a long enough time that they don't forget what it is like. in other cultures, BTW, you cannot be a healer unless you have suffered. very different from our medical system, which is seriously lacking in empathy and compassion. but i suppose that's another story. sort of. i mean they can be really invalidating too. i had a doctor tell me once "it could be worse. you could have cancer."
I snapped. I said well at least if you have cancer you either get better or die! (as opposed to draggin around feeling like crap and popping pills for decades!). He caught me at my wit's end- what can i say. But i don't regret it one iota. Not because I think lupus is worse than cancer or cancer is worse than lupus, but i just think it's *so* wrong to play the "who's got it worse?" game. I don't think he could have picked a worse thing to say. He's lucky I'm too weak to strangle anyone.
Something from the bible that has stuck with me: “it is not wise to compare amongst yourselves.” For example, lupus can be much worse or much less severe than breast cancer. some cancer patients just have a lumpectomy; others have it travel to their lymph system and die a painful death. Some lupus patients have mild fatigue and rashes while others, like me, suffer kidney failure, migraines, pleurisy, high blood pressure, anemia, congestive heart failure, even a stroke during a flare- it can still be a deadly disease, and most who die from lupus die of heart failure. And getting lupus doesn't exclude you from getting cancer, or vice versa. I've met folks who have had both.
So, in getting out of the pity party and competition frames of mind, I think that gratitude is definitely a very powerful choice. when I am feeling really stinky sorry for myself because I can't do the things I'd like to and no one understands and this stupid thing is probably never going to go away (notice I said "probably" even after 16 years of this, I still have hope!) I make a gratitude list. it’s a real pick-me-upper!
Hiding from the sun. Or not!
I found this article on sunscreens; many of them contain very hazardous chemicals that can harm us. A lot of
big name brands are the culprits, like Coppertone, Avon, Walgreen's. http://www.NaturalNews.com/021927.html
Also check out www.cosmeticsdatabase.com to get the ratings of all the various sunscreens out there. There are some healthy ones out there that pose little to no hazard to our well-being. and of course also some really toxic ones that make you wonder why they are allowed on the market!
I've been suspicious of commercial sunscreen for a while, and that is why i have been buying clothes with 50 SPF, to avoid slathering myself in chemicals if I'm going to be in the sun long enough to burn.
This goes counter to conventional thinking among lupus patient, but I think we need to get a little sun in order to be healthy. Not a lot- don't start sunbathing in the nude, or staying outside for hours and getting burnt just because I think we need a tad of sunshine in our lives. Just like a few minutes a day. I *have* to go out several times a day because we have a dog. Thanks to her I get a little dose of sunshine and fresh air (well as fresh as it gets in new jersey) and social interaction with the neighbors several times a day. Ever notice how a smiley face looks a lot like the sun?
I hear getting some sunshine helps the body create its own vitamin D, and calcium can’t be absorbed without that. A lot of lupus patients are told that sun exposure triggers lupus, so they cover themselves with toxic sunscreens, hide under an umbrella, wear long sleeves and floppy hats, or even adjust their schedule so they only go out at night. I think this is a bit extreme in most cases, unless you really do get a rash from the couple minutes of sun exposure while walking to the car.
But often we react this way because it's the *only* thing doctors give us any control over. The are ignorant about nutrition (almost no education about that in Med school, because it's *med*ical school, not *food*ical school, and these schools are funded by pharmaceutical companies who would much rather we depend on them for our well-being). They look down their noses at alternative medicine. The *only* bit of personal power we are given by these demi-gods is to stay out of the sun.
Now remember, I’m not a doctor, i just play one on myself.
big name brands are the culprits, like Coppertone, Avon, Walgreen's. http://www.NaturalNews.com/021927.html
Also check out www.cosmeticsdatabase.com to get the ratings of all the various sunscreens out there. There are some healthy ones out there that pose little to no hazard to our well-being. and of course also some really toxic ones that make you wonder why they are allowed on the market!
I've been suspicious of commercial sunscreen for a while, and that is why i have been buying clothes with 50 SPF, to avoid slathering myself in chemicals if I'm going to be in the sun long enough to burn.
This goes counter to conventional thinking among lupus patient, but I think we need to get a little sun in order to be healthy. Not a lot- don't start sunbathing in the nude, or staying outside for hours and getting burnt just because I think we need a tad of sunshine in our lives. Just like a few minutes a day. I *have* to go out several times a day because we have a dog. Thanks to her I get a little dose of sunshine and fresh air (well as fresh as it gets in new jersey) and social interaction with the neighbors several times a day. Ever notice how a smiley face looks a lot like the sun?
I hear getting some sunshine helps the body create its own vitamin D, and calcium can’t be absorbed without that. A lot of lupus patients are told that sun exposure triggers lupus, so they cover themselves with toxic sunscreens, hide under an umbrella, wear long sleeves and floppy hats, or even adjust their schedule so they only go out at night. I think this is a bit extreme in most cases, unless you really do get a rash from the couple minutes of sun exposure while walking to the car.
But often we react this way because it's the *only* thing doctors give us any control over. The are ignorant about nutrition (almost no education about that in Med school, because it's *med*ical school, not *food*ical school, and these schools are funded by pharmaceutical companies who would much rather we depend on them for our well-being). They look down their noses at alternative medicine. The *only* bit of personal power we are given by these demi-gods is to stay out of the sun.
Now remember, I’m not a doctor, i just play one on myself.
Are they trying to get rid of us? Dangers of Cellcept
holy crap. I’ve been on cellcept for lupus since fall 06. I’m on a lupus chat group and now it seems like they’re giving *everyone* with lupus cellcept, even those with no major organ involvement, which I think is irresponsible. first of all, much as I hate the crap, prednisone works much faster and has a longer track record. Second of all, again, I do not like the drug but it works, Prednisone is like $4 a month and cellcept is $800. EIGHT HUNDRED. I know, because even though I had prescription coverage last year, i still paid $5000 out of pocket for drugs. About 95% of that was for cellcept.
I can only say the drug reps must be doing a helluva a job schmoozing up the doctors and convincing them to prescribe this expensive, unproven drug to every lupus patient (and there are millions of us, so what a racket!) Someone’s getting a new Beemer and a vacation in Rio. And someone else is getting an early grave (PML).
>>>>
FDA issues a Communication About an Ongoing Safety Review of CellCept and Myfortic
ROCKVILLE, Md., April 10, 2008–FDA is investigating a potential association between the use of CellCept (mycophenolate mofetil) and Myfortic (mycophenolic acid), medicines used to prevent organ rejection, and the development of progressive multifocal leukoencephalopathy (PML), a life-threatening disease.
PML is a rare disorder that affects the central nervous system. When it occurs, it is usually in patients with immune systems suppressed by disease or medicines. It happens when the polyomavirus, also known as the JC virus, is activated. The JC virus is found in most adults but does not usually cause symptoms. Scientists do not know exactly how the JC virus is activated. Once activated, the JC virus attacks the cells that make myelin, the protective coating around nerve cells. Signs and symptoms of PML can include localized neurologic signs and symptoms including vision changes, loss of coordination, clumsiness, memory loss, difficulty speaking or understanding what others say, and weakness in the legs. Many patients who develop PML die. Patients who survive may have permanent disability due to irreversible nerve damage. More information on PML can be found at the National Institutes of Health website.
CellCept is approved to prevent heart, liver, and kidney transplant rejection and Myfortic is approved to prevent kidney transplant rejection. Mycophenolate mofetil, the drug ingredient in CellCept, is metabolized by the body to mycophenolic acid, the drug ingredient in Myfortic. Both CellCept and Myfortic are used with other drugs to suppress the immune system.
On November 8, 2007, Roche, the maker of CellCept, submitted an evaluation of its PML cases in patients who have received CellCept in addition to other immunosuppressive medicines. Roche also submitted recommendations to the FDA for including information about PML in the CellCept prescribing information. On March 14, 2008, Roche informed the FDA of the Dear Health Care Professional letter it issued in Europe on February 18, 2008.
Roche is aware of cases of PML in transplant recipients and patients with systemic lupus erythematosus (SLE), an autoimmune disorder that is sometimes treated with CellCept; however, CellCept and Myfortic are not approved for treating SLE or similar autoimmune disorders.
FDA is reviewing data submitted by Roche, including postmarketing reports it has received of PML in patients who took CellCept or Myfortic, and the proposed revisions to the CellCept prescribing information. FDA has asked Novartis, the maker of Myfortic, for data on PML cases and to revise the Myfortic prescribing information to include the same information about PML included in the CellCept prescribing information.
FDA anticipates it may take about 2 months to complete its review of the postmarketing reports and the proposed revised prescribing information for CellCept and Myfortic about PML. As soon as FDA completes the review, FDA will communicate the conclusions and recommendations to the public. Until further information is available, patients and healthcare professionals should be aware of the possibility of PML, such as localized neurologic signs and symptoms in the setting of a suppressed immune system, including during therapy with CellCept and Myfortic. Decreasing total immunosuppression may improve the outcome of patients who develop PML.
This communication is in keeping with FDA’s commitment to inform the public about its ongoing safety reviews of drugs.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Yes, it's killing people, but more importantly (the cha-ching):
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
....More than 500,000 patients worldwide have used CellCept, which brought in more than $2 billion Swiss francs ($1.99 billion U.S. dollars) in 2007, according to the company....
Sales of a multiple sclerosis drug, Biogen Idec Inc’s and Elan Corp Plc’s Tysabri, were suspended in 2005 amid three reports of PML.
The drug returned to the market in 2006 with limits, when the FDA decided patients were willing to accept the risk in light of the drug’s benefits.
The agency said it has also asked Novartis for related data and called on the drugmaker to update its prescribing information on Myfortic’s label. The drugmaker does not provide specific sales figures for Myfortic because it is not one of its top 20 products.
In a statement, Novartis said while it “is not aware of any instances of PML in patients using Myfortic, we will comply with the class label change requested by FDA.”
Shares of Novartis were off 3.9 percent, or $1.90, at $47.27 in afternoon trading on the New York Stock Exchange; earlier they closed down 2.8 percent in Switzerland. Shares of Roche closed down nearly 1 percent on the Swiss exchange. (Reporting by Susan Heavey; editing by Gerald E. McCormick and Dave Zimmerman)
I can only say the drug reps must be doing a helluva a job schmoozing up the doctors and convincing them to prescribe this expensive, unproven drug to every lupus patient (and there are millions of us, so what a racket!) Someone’s getting a new Beemer and a vacation in Rio. And someone else is getting an early grave (PML).
>>>>
FDA issues a Communication About an Ongoing Safety Review of CellCept and Myfortic
ROCKVILLE, Md., April 10, 2008–FDA is investigating a potential association between the use of CellCept (mycophenolate mofetil) and Myfortic (mycophenolic acid), medicines used to prevent organ rejection, and the development of progressive multifocal leukoencephalopathy (PML), a life-threatening disease.
PML is a rare disorder that affects the central nervous system. When it occurs, it is usually in patients with immune systems suppressed by disease or medicines. It happens when the polyomavirus, also known as the JC virus, is activated. The JC virus is found in most adults but does not usually cause symptoms. Scientists do not know exactly how the JC virus is activated. Once activated, the JC virus attacks the cells that make myelin, the protective coating around nerve cells. Signs and symptoms of PML can include localized neurologic signs and symptoms including vision changes, loss of coordination, clumsiness, memory loss, difficulty speaking or understanding what others say, and weakness in the legs. Many patients who develop PML die. Patients who survive may have permanent disability due to irreversible nerve damage. More information on PML can be found at the National Institutes of Health website.
CellCept is approved to prevent heart, liver, and kidney transplant rejection and Myfortic is approved to prevent kidney transplant rejection. Mycophenolate mofetil, the drug ingredient in CellCept, is metabolized by the body to mycophenolic acid, the drug ingredient in Myfortic. Both CellCept and Myfortic are used with other drugs to suppress the immune system.
On November 8, 2007, Roche, the maker of CellCept, submitted an evaluation of its PML cases in patients who have received CellCept in addition to other immunosuppressive medicines. Roche also submitted recommendations to the FDA for including information about PML in the CellCept prescribing information. On March 14, 2008, Roche informed the FDA of the Dear Health Care Professional letter it issued in Europe on February 18, 2008.
Roche is aware of cases of PML in transplant recipients and patients with systemic lupus erythematosus (SLE), an autoimmune disorder that is sometimes treated with CellCept; however, CellCept and Myfortic are not approved for treating SLE or similar autoimmune disorders.
FDA is reviewing data submitted by Roche, including postmarketing reports it has received of PML in patients who took CellCept or Myfortic, and the proposed revisions to the CellCept prescribing information. FDA has asked Novartis, the maker of Myfortic, for data on PML cases and to revise the Myfortic prescribing information to include the same information about PML included in the CellCept prescribing information.
FDA anticipates it may take about 2 months to complete its review of the postmarketing reports and the proposed revised prescribing information for CellCept and Myfortic about PML. As soon as FDA completes the review, FDA will communicate the conclusions and recommendations to the public. Until further information is available, patients and healthcare professionals should be aware of the possibility of PML, such as localized neurologic signs and symptoms in the setting of a suppressed immune system, including during therapy with CellCept and Myfortic. Decreasing total immunosuppression may improve the outcome of patients who develop PML.
This communication is in keeping with FDA’s commitment to inform the public about its ongoing safety reviews of drugs.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Yes, it's killing people, but more importantly (the cha-ching):
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
....More than 500,000 patients worldwide have used CellCept, which brought in more than $2 billion Swiss francs ($1.99 billion U.S. dollars) in 2007, according to the company....
Sales of a multiple sclerosis drug, Biogen Idec Inc’s and Elan Corp Plc’s Tysabri, were suspended in 2005 amid three reports of PML.
The drug returned to the market in 2006 with limits, when the FDA decided patients were willing to accept the risk in light of the drug’s benefits.
The agency said it has also asked Novartis for related data and called on the drugmaker to update its prescribing information on Myfortic’s label. The drugmaker does not provide specific sales figures for Myfortic because it is not one of its top 20 products.
In a statement, Novartis said while it “is not aware of any instances of PML in patients using Myfortic, we will comply with the class label change requested by FDA.”
Shares of Novartis were off 3.9 percent, or $1.90, at $47.27 in afternoon trading on the New York Stock Exchange; earlier they closed down 2.8 percent in Switzerland. Shares of Roche closed down nearly 1 percent on the Swiss exchange. (Reporting by Susan Heavey; editing by Gerald E. McCormick and Dave Zimmerman)
Friday, April 11, 2008
hoo boy people can be judgmental
wow. so i was reading a blog by an woman who calls herself "possummama." SHe has lupu and happens to be an atheist. SOmeone who calls themself "savedinchrist" chimed in with all kind of "Christian" hate. savedinchrist is a real piece of work. and i gotta say, while I don't understand atheism, I have had atheist friends, and they were far more interesting to talk to (and far less judgmental) than S-I-C (a perfect acronym for someone who can't spell).
Why do people lash out at others the way SIC does?
I can tell you. I have been there. i am a CHristian, and left the fundamentalist church I was in when they all but threw me out because I developed lupus and could not be healed by faith. they kept telling me things like I must have sin in my life and that's why I'm sick, or my faith was failing and that's why I wasn't healed. or i was doing god's work so the devil was attacking me. (uh, pick one they can't all be true).
And what about St Paul who suffered some sort of chronic illness (A "thorn in the side") and asked ot be healed but was not? does this mean he was not a "good enough" person?
the reason people act this way is simple: self-centered fear. they figure if they live their life "perfectly" (by always being at church and trying to recruit everyone else to be exactly like them) then nothing bad will happen to them. they can convince themselves that you have lupus because you're an atheist.
I am not an atheist and I and at least 1 million other americans have lupus. we have an autoimmune epidemic going on, which i believe is caused by pollution of our environment and crap being put in our food supply, much of which we dont' even know about.
i believe we can acheieve better health and wholeness through some form ofspiritual practice, whether it be meditating, yoga, gardening, journalling, as well as seeking out alterntive medicine. yes i do believe prayer can work. but if you are not a believer, there are other things that can work.
and thinking you're goign to win anyone over to your way of thinking by attacking them is just dumb.
"Christian" means "little Christ"
SIC, do you really think you are acting like Christ? what would jesus do?
would he only help those who already believed?
clearly not (read the gospels).
would he blame people for their illnesses? no.
would he give someone a meal and a blanket or just say "be ye warmed and filled" (also in the bible)
would he say to someone whose exposure to the sun makes them very ill (and this is real, I have lupus too) "you spent a minute in the sun taking a picutre, so you're a sham"
thinkin about it. where's the love that was showered on you, SIC, that was so generously poured out on you when Christ died on the cross, just as much for your sins as anyone else's?
and don't think you are without sin just because you believe. You are only forgiven, not perfect.
Why do people lash out at others the way SIC does?
I can tell you. I have been there. i am a CHristian, and left the fundamentalist church I was in when they all but threw me out because I developed lupus and could not be healed by faith. they kept telling me things like I must have sin in my life and that's why I'm sick, or my faith was failing and that's why I wasn't healed. or i was doing god's work so the devil was attacking me. (uh, pick one they can't all be true).
And what about St Paul who suffered some sort of chronic illness (A "thorn in the side") and asked ot be healed but was not? does this mean he was not a "good enough" person?
the reason people act this way is simple: self-centered fear. they figure if they live their life "perfectly" (by always being at church and trying to recruit everyone else to be exactly like them) then nothing bad will happen to them. they can convince themselves that you have lupus because you're an atheist.
I am not an atheist and I and at least 1 million other americans have lupus. we have an autoimmune epidemic going on, which i believe is caused by pollution of our environment and crap being put in our food supply, much of which we dont' even know about.
i believe we can acheieve better health and wholeness through some form ofspiritual practice, whether it be meditating, yoga, gardening, journalling, as well as seeking out alterntive medicine. yes i do believe prayer can work. but if you are not a believer, there are other things that can work.
and thinking you're goign to win anyone over to your way of thinking by attacking them is just dumb.
"Christian" means "little Christ"
SIC, do you really think you are acting like Christ? what would jesus do?
would he only help those who already believed?
clearly not (read the gospels).
would he blame people for their illnesses? no.
would he give someone a meal and a blanket or just say "be ye warmed and filled" (also in the bible)
would he say to someone whose exposure to the sun makes them very ill (and this is real, I have lupus too) "you spent a minute in the sun taking a picutre, so you're a sham"
thinkin about it. where's the love that was showered on you, SIC, that was so generously poured out on you when Christ died on the cross, just as much for your sins as anyone else's?
and don't think you are without sin just because you believe. You are only forgiven, not perfect.
Saturday, April 5, 2008
Top 10 Ways You Know you Are at a Palliative Care Conference
10 ways you know you are at a palliative care
conference
10) the conference opens not with HEY EVERYBODY
WELCOME TO OUR 2007 SYMPOSIUM WOOOOOOOH! but "ok
everyone let's get started."
9) most of the powerpoints include slides of scenery
or dogs or both.
8) at no point has anyone said "After my presentation
I'll be signing autographs in the bookstore."
7) You learn at least one new way to administer a
narcotic
6) All the website addresses are forward slash bunch
of letters slash tilda letters underscore forward
slash tilda letter letter dot gov dot html
5) You're in Alaska
4) instead of free beer, free beads
3) evening activities do not involve drunkenness and
nudity (as far as I know)
2) one panelist uses the word "rectally" 27 times and
"suppository" 29 times and no one even blinks.
1) the room is filled with loving respectful people
who make a difference by giving of themselves
I'm grateful for the folks in healthcare who see how bad it is and try to make things different, but i am sad that the system makes it so difficult for them to do so, or that they forget to stop and care for themselves, that there is a high burnout rate. It's nice to know someone "inside" the system "gets it."
conference
10) the conference opens not with HEY EVERYBODY
WELCOME TO OUR 2007 SYMPOSIUM WOOOOOOOH! but "ok
everyone let's get started."
9) most of the powerpoints include slides of scenery
or dogs or both.
8) at no point has anyone said "After my presentation
I'll be signing autographs in the bookstore."
7) You learn at least one new way to administer a
narcotic
6) All the website addresses are forward slash bunch
of letters slash tilda letters underscore forward
slash tilda letter letter dot gov dot html
5) You're in Alaska
4) instead of free beer, free beads
3) evening activities do not involve drunkenness and
nudity (as far as I know)
2) one panelist uses the word "rectally" 27 times and
"suppository" 29 times and no one even blinks.
1) the room is filled with loving respectful people
who make a difference by giving of themselves
I'm grateful for the folks in healthcare who see how bad it is and try to make things different, but i am sad that the system makes it so difficult for them to do so, or that they forget to stop and care for themselves, that there is a high burnout rate. It's nice to know someone "inside" the system "gets it."
Friday, April 4, 2008
i hate the needles. it doesn't matter how many times i get my blood taken, or an IV put in, or chelation or chemo, i never get used to it.
I have this theory now that a little controlled bloodletting under these conditions may actually be good for me. one of the many theories i've read recently about what may exacerbate or trigger lupus is the overabundance of dead cells, and our not being able to clear them. so our immune system goes nuts attacking them. these cells are killed off at a faster than normal rate by things such as harsh sunburns, toxins, pollutants and in particular aspartame (nutrasweet, there goes the diet coke, people!)
so when i get my blood taken i think "there's a chance for my body to make some fresh new blood"
it doesn't make the needle hurt any less but it does make me feel better about having to go through it.
And then when i fall off the wagon and start drinking diet coke again, which seems to happen when i travel, the universe takes care of me by send in me an e mail article from one of the health newsletters i receive about "excitotoxins" (a.k.a. neurotoxins) and how they cause *cell death.* For some reason, the term "cell death" really speaks to me right now, so I say "OK" and i throw the remaining diet coke down the drain and get back to drinking something from nature, like tea or water.
Funny how when you talk about toxins a lot of people still laugh and think you're some kind of paranoid nut. Because they've bought into the idea that Drs buy into, which is that all disease is caused by germs/ viruses or genetics. that kind of thinking abdicates all personal responsibility for our own actions, including diet, exercise, stress management, personal relationships, life balance, getting enough rest, eating real food and drinking plenty of clean water, not chain smoking (which BTW causes COPD more than it does lung cancer, and only a fraction of folks with lung cancer are smokers), not holding a cell phone to our head all day long (now linked to brain tumors), and maintaining a social and a spiritual life.
If you read the pamphlets from your pharmacist when you pick up your drugs you'll see language about toxins and toxicity. In fact, many people get liver toxicity from TYLENOL, which for some reason is the drug of choice in hospitals for pain. Even though I have taken 12 tylenol in the course of a few hours and got no pain relief whatsoever.
Toxins. They are real. They are in our food, air, water, soil, relationships, and especially our pharmaceuticals. We can eliminate them through various means. Our 5 eliminative organs are : kidney colon liver lungs and spleen. Which is why some detox programs include coffee enemas or colonics (Colon), water fasting (kidney), poutices (liver/ spleen), and deep breathing (lungs). When I was in kidney failure and had pleurisy (limited lung capacity), I detoxed using enemas and baths, which involed organs (colon adn skin) that as far as I knew were not in danger of failing. I also now use foot detox pads.
for whatever reason, people with SLE are not supposed to use saunas; nor are people with high blood pressure. Saunas or very popular in some countries,a dn a wonderful refreshing way to detox.
A word about high-fiber diets- switching too suddenly to high-fiber can be tough on your colon, and even cause little tears, which can leak toxins into your body. So work with a health professional if you can, in order to decide which detox path is right for you.
I have this theory now that a little controlled bloodletting under these conditions may actually be good for me. one of the many theories i've read recently about what may exacerbate or trigger lupus is the overabundance of dead cells, and our not being able to clear them. so our immune system goes nuts attacking them. these cells are killed off at a faster than normal rate by things such as harsh sunburns, toxins, pollutants and in particular aspartame (nutrasweet, there goes the diet coke, people!)
so when i get my blood taken i think "there's a chance for my body to make some fresh new blood"
it doesn't make the needle hurt any less but it does make me feel better about having to go through it.
And then when i fall off the wagon and start drinking diet coke again, which seems to happen when i travel, the universe takes care of me by send in me an e mail article from one of the health newsletters i receive about "excitotoxins" (a.k.a. neurotoxins) and how they cause *cell death.* For some reason, the term "cell death" really speaks to me right now, so I say "OK" and i throw the remaining diet coke down the drain and get back to drinking something from nature, like tea or water.
Funny how when you talk about toxins a lot of people still laugh and think you're some kind of paranoid nut. Because they've bought into the idea that Drs buy into, which is that all disease is caused by germs/ viruses or genetics. that kind of thinking abdicates all personal responsibility for our own actions, including diet, exercise, stress management, personal relationships, life balance, getting enough rest, eating real food and drinking plenty of clean water, not chain smoking (which BTW causes COPD more than it does lung cancer, and only a fraction of folks with lung cancer are smokers), not holding a cell phone to our head all day long (now linked to brain tumors), and maintaining a social and a spiritual life.
If you read the pamphlets from your pharmacist when you pick up your drugs you'll see language about toxins and toxicity. In fact, many people get liver toxicity from TYLENOL, which for some reason is the drug of choice in hospitals for pain. Even though I have taken 12 tylenol in the course of a few hours and got no pain relief whatsoever.
Toxins. They are real. They are in our food, air, water, soil, relationships, and especially our pharmaceuticals. We can eliminate them through various means. Our 5 eliminative organs are : kidney colon liver lungs and spleen. Which is why some detox programs include coffee enemas or colonics (Colon), water fasting (kidney), poutices (liver/ spleen), and deep breathing (lungs). When I was in kidney failure and had pleurisy (limited lung capacity), I detoxed using enemas and baths, which involed organs (colon adn skin) that as far as I knew were not in danger of failing. I also now use foot detox pads.
for whatever reason, people with SLE are not supposed to use saunas; nor are people with high blood pressure. Saunas or very popular in some countries,a dn a wonderful refreshing way to detox.
A word about high-fiber diets- switching too suddenly to high-fiber can be tough on your colon, and even cause little tears, which can leak toxins into your body. So work with a health professional if you can, in order to decide which detox path is right for you.
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