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.
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