Organ Damage

[refinnej30]

Hi Mike.

I've been battling Uveitis since 1999. I tried mtx from 2004-2006 and discontinued due several infections. Until my last flare in March 2013 I used Pred Forte and a dilator. This time I also needed an injection under my eye. I saw Dr. Foster (I used to live in Cape Cod) and he suggested Cellcept. We moved to Florida 4 months ago and I got situated with doctors. My spouse is military so we move ever 3 to 4 years so I've seen different Ocular Immunologists and rheumatologist. Sometimes they agreed and other times they didn't. All my docs are pretty well versed in what I have and are working together. I began Cellcept and got sick after a few weeks with a virus. I was only at 500mg 2xs a day, but was absolutely exhausted. I stopped when I got sick for a few days per my Rheumys advice. Then everyone around me got sick, so we decided to begin back up after Thanksgiving since I will be exposed to so many people.

My concern is my blood work numbers have changed since my last flare in March and my current Rheumy acted strange my last appointment. I've seen her several times and found her to be very calm and knowledgeable. I had x-rays done and initially it sounded like my spine was involved and was expecting as diagnosis of AS, but upon further examination she found a curve in my spine. My Rheumy said I am probably having muscle spasms and that would be why my back hurts all the time. She said it didn't look like there was any damage, but she ordered the actual copies so she could look it over with a magnifying glass to see if there is any damage because she said she didn't like the way it looked. She then went over my blood work and my ANA had quadrupled. She also said it wasn't the highest she had ever seen, but seemed very concerned about the number. She then said she was very concerned about organ damage and sounded surprised that my eyes were ok. She also found minor swelling in my hands. She also asked me who she should contact regarding my eyes to see who would take responsibility of changing the meds if necessary. I gave her Dr. Foster's info as he said he would work with my doctors. I am going back on Cellcept, but she said she had tests done to make sure I could go in Imuran if Cellcept doesn't seem to work.

I know part of the issue with the illness is not knowing.
I just don't feel like myself, but I feel worse on Cellcept and ended up spending half the week in bed. Do you know if the fatigue lessens as my body adjusts to it?
In your experience do you have any idea what could be going on that my ANA would increase so much?

I am currently on:
Celebrex 200 mg 2xs
Cellcept 1g 2xs

Diagnosed with Fibromyalgia, Chronic Uveitis and IBS

HLA B27+
ESR 31
ANA 1:640 Homogeneous
CRP 18.10

As Always, thanks for your help. I am SO thankful for you!
Jennifer

[Mike Bartolatz]

Jennifer,
please consider testing for Crohn's disease and for Sarcoidosis. also test for systemic lupus erythematosus and Sjogren's syndrome
SLE and lupus markers are anti RO (SSA) and anti LA (SSB) a also Smith antibody and SCL70 for scleroderma/systemic sclerosis. also check for clotting factors and antiphospholipid antibodies and amyloidosis.
with the IBS it goes along with a bunch of stuff such as Crohn's and ulcerative colitis linked to uveitis as well as Sarcoidosis
sometimes but not always ACE levels are increased in sarcoidosis if your uveitis is now granulomatous the odds of these things increase.
neuro sarcoidosis can mimic fibromyalgia and peripheral neuropathy is common in it when the sarcoidosis goes beyond the lungs. sometimes lung involvement doesn't even occur in sarcoidosis. if you have dry eye and dry mouth biopsy can be done on a salivary gland to tell between sarcoidosis and Sjogren's or SLE.
if you can, get in to see DR Victor Perez at Bascom Palmer there in Florida. he trained under DR Foster and will easily work with CSF.
you could also ask to be checked for the NOD2/CARD15 gene sometimes found in Crohn's and Sarcoidosis. usually found in familial sarcoidosis but it is also being found in about 30% of sarcoidosis patients who are checked for it. this gene plays an important role in the inflammatory process of Crohn's disease to which is also a granulomatous disease and which can share symptoms with the seronegative spondyloarthropathies as well. there can be similar granulomatous lung disease associated with Crohn's too. do you get rashes on your body? do you have tinnitus?
the swollen hands occurs in Sarcoidosis too in some individuals as well as the feet and legs. Any organ of the body can be impacted. this is true for Scleroderma. I mention this as there are many overlap conditions such as MAD (multiple autoimmune disease), MCTD (mixed connective tissue disease) and UCTD (undifferentiated connective tissue disease) that could also explain your fibromyalgia symptoms.

I hope this thanksgiving will bring you much deserved rest and healing.
God Bless my friend,
Mike Bartolatz

[refinnej30]

Mike,
Thanks for the input. I am very frustrated after 14 years of trying to figure out what is going on with no answers. I am very organized, I carry a binder with all my info, doctors finding and labs, but I find most doctors ignore it. Just want to get all my ducks in a row for when I see my doctor next to make sure I have my facts straight.

Here are some random things just to see if anything jumps out at you.

I think besides the fatigue, the most difficult issue I am having is my mind. It is so cloudy. My short term memory is nonexistent. I have a degree in Engineering and Accounting so I am well educated, but I can't seem to get things together. I used to plan my day and now I don't know where most of my day went. I used to read books like crazy. I'd easily read a book on a lazy day and now I can barely concentrate or focus long enough to finish a few pages.

Regarding Crohn's. Initially I had Crohn's symptoms during the first several flares. I've had 3 colonoscopies and even though the first showed lesions that appeared to be Crohn's the biopsy turned out to be negative. The other two showed nothing and it was labeled as IBS or food related. I was told that I was very constipated in my last xray even though I feel fine.

I've had two Dysplastic Nevi removed in the last year.

I've noticed my vision is blurry when I focus, but I was told that was part of the aging process. It is like a dizzy blur every now and then when I focus and a wave hits and then it quickly passes. I do have some floaters with cells attached that are a little bothersome in one eye, but they seem to be geting better.

I have really dry flaky skin on my ears that itches and has small sores on the lobe and creases that I thought was due to shampoo, but is getting worse even after changing shampoo. I had stubborn ear issues when I was like 5 or 6, behind the ears like a rash that would ooze and it took like a year to go away. I am wondering if it is Psoriasis.

Regarding tinnitus my ears will often have popping noises and feel clogged for days and sometimes weeks at a time.

I asked my Rheumy if I had Lupus, but she didn't think so.

As always thank you for your help. Happy Thanksgiving. I am thankful for you!
Jennifer

[Mike Bartolatz]

you might consider a consult with a dermatologist for a biopsy of your ears tissues and rashes. skin stuff linked to psoriasis can be differentiated between that of sarcoidosis where a similar rash has been found to occur on the ears. pre cancerous testing should also be done (I had a similar type of rash with peeling on my ears and on biopsy it was found to be precancerous and they froze it for me) the only way to tell between psoriasis and skin sarcoidosis is through biopsy. get checked for the NOD2/CARD15 gene linked to both sarcoidosis and crohn's disease. HLA B27 is linked to Psoriasis, crohn's disease, ulcerative colitis, ankylosing spondylitis, reactive arthritis as well as to iridocyclitis which would be the type of uveitis that you most likely have with the cells in the vitreous that you describe. the swelling hands is seen in psoriatic arthritis. if this is present then you would be candidate for the use of the drug STELARA which acts differently than the other TNF A blocking drugs. Stelara blocks IL23R gene that causes IL17 to be produced a major inflammatory cytokine that causes TNF A to be made by the immune system. it has also been effective in Uveitis linked to psoriatic arthritis from anecdotal information I have had by other patients who have not had their uveitis resolve with other treatment medications.

all of the above conditions can appear at the same time BTW causing undifferentiated connective tissue disease which is often misdiagnosed as fibromyalgia or mixed connective tissue disease.

get the ear stuff biopsied right away as it might be the symptom that leads to better control of your systemic disease processes going on.

have a wonderful Thanksgiving,
Mike