Sunday, April 27, 2008

results of lupus survey

I set up a survey about lupus on, 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%
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%

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
-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
-irisitis - inflamation of the muscle around the
-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

5) which medical treatments have you been on for
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

- rituxan
- Celebrex & Norflex
- diuretic, singulair, zocor
- quinine
- Fiorocet
- Methatrexare,Oxtcontin,Zoloft,Muscle relaxer
- 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
- imuran
-. Amitriptaline 10mg
- Etodolac and Lexapro
- enbrel
- minocin
-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
-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,
- 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
- Hughs Syndrome
- brain tumor
- Chronic Kidney Disease stage IV, Interstatial
nephritis (forgive the spelling)
- none diagnosed
- 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
- 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
-If covered by insurance, I'd try most of these
-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
- 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
- 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

I have to interject here, IT IS ILLEGAL TO FIRE

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 I feel
-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..
- still learning, natural lifestyle does help with my
-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
- 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
- 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

- 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

- 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
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