Author Topic: GRANULOMAS AND SJS  (Read 2271 times)

BUNKIE09

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GRANULOMAS AND SJS
« on: September 02, 2011, 04:32:01 AM »
I have a question that has been haunting me for years. I was diagnosed with SJS back in 1999 with a lip biopsy and get all the dry issues. Back in 2003 I had a lung biopsy that showed granulomas and some scar tissue. The surgeon sent the results to the lab and the diagnosis was consistant with Sarcoidosis. They say I have both but I am wondering if there are granulomas that show up from the SJS. I do not seem to get the Sarcoid any other place and yet I get the SJS all over. Fatigue, stiff sore joints, dry eyes, sinus & parotid involvement, dry glads all over my body. I keep wondering if I do not have Sarcoid at all but just SJS. Neither are fun but just wondering.

Linda196

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Re: GRANULOMAS AND SJS
« Reply #1 on: September 02, 2011, 11:59:52 AM »
I have been diagnosed with both Sarc and SjS as well, and in my case, my doctor explained to me that the sarc granulomas could be differentiated from the SjS lymphocyte clusters because of the different white blood cells involved. In fact, even though I had positive anti-SSA and SSB, and could be firmly diagnosed on that, I had a lip biopsy to see it there were sarc granulomas in that tissue....the lymphocyte clusters were "predominately non-granulamatosis" reinforcing the SjS diagnosis. Because my Sarc was DXd via a lymphnode biopsy showing "encased and evolving calcification of granulomas" that was very firm for sarcoidosis.

It isn't uncommon to have sarcoidosis show up only in the lung tissue, in fact I'm the odd one out because that's the only place I don't seem to form granulomas!
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BUNKIE09

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Re: GRANULOMAS AND SJS
« Reply #2 on: September 02, 2011, 02:49:24 PM »
Thanks Linda196,

It has been bothering me. I had a lung biopsy in 03 to find out what was causing the shadows in my lungs. I never read the pathology but my pulmonist said it was Sarcoid. I never had a cough. I did have bronchitis a few times back then and now I have Asthma. My lungs have stayed the same except the scar tissue is a tiny bit more. I have all the symptoms of both diseases. Yuck. With the weather going into fall and all the ragweed and molds I have been dog sick but refuse any more prednisone. I have been on it for 4 straight years and am trying to get off. I am at 5.5mgs and going down .5 every 6 weeks. That is how dependant I am on it.

The SJS was also a tear test back when I first got sick. I tell you if it isn't one thing it is another. Thanks again for the post.
Can I ask which disease gives you the most issues?

Linda196

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Re: GRANULOMAS AND SJS
« Reply #3 on: September 05, 2011, 08:53:57 AM »
Kind of depends on what you mean by Issues  ;D

I joked with my rheumy about coping for nearly 30 years with sarcoid's various contributions but still being able to work and having the option of declining the heavy duty treatments only to have to give in to steroids and chemo for "just a dry mouth"! His comment was "don't ever belittle the severity of SjS...I'm having a difficult enough time convincing my patients to accept treatment because they read about it being an inconvenience and think I'm just trying to make a buck on them"!

Of course we were both joking, since we were both well aware of the potentials, and he wouldn't make a penny more on anyone because our provincial health care plane pays him a flat rate no matter if he sees someone once for acute inflammatory injury or once a week for a severe autoimmune disease.

I guess I'd have to say SjS causes the most acute issues, while Sarcoid causes the most long term ones. As to the steroids, I'm on a flex dose of 7.5-15 mg/day depending on degree of symptoms, and will probably never be off it. Weaning got me down to a low of 7.5, but I can't even stay down there for more than a few weeks at a time, after 8 years, and that's in addition to Methotrexate and Plaquenil.
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BUNKIE09

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Re: GRANULOMAS AND SJS
« Reply #4 on: September 08, 2011, 05:10:30 AM »
I agree Linda. The SJS is the most acute. Just started to wake up with my mouth very dry again. My WBC count is up a bit with the lower dose of steroid. I still want off if only for long enough to get some testing done. My allergy tests are inconclusive because of the steroids. My natropath seems to think that if I creep down .5mgs every 6-8 weeks my body will not revolt. We will see. Have been mixing all my doctors to get a plan together.

I would think the methetrexate would control it but I guess not. I feel fortunate to get down to 5.5 but it has only been a few weeks and fall is here. Winter is my worst season for SJS and Sarcoid but my best for allergies. Go figure.

My worst symptom is vertigo. Relentless and every day for the last 3 years. I have an apt with a neuro-vertigo specialist at U of Mi this month. Can't tell if it is the SJS or the Sarcoid causing it.

Explorer

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Re: GRANULOMAS AND SJS
« Reply #5 on: September 10, 2011, 04:13:34 AM »
Hi there,

This thread is interesting. I had a skin biopsy done on some swellings I had on my fingers back in 2008, which was said to have found some granulomas, which was consistant with a Lupus Pernio diagnosis (which from what I can gather is a skin manifestation of sarcoid) my chest xray and bloods were clear at this time.

2 years later I started developing alot of new symptoms - fatigue, muscle and joint pain, eye stinging sensations, muscle twitching, neuropathy to name a few, I was recently diagnosed with Sjogrens through a schrimer test and also raynauds.

I have always wondered if the lupus pernio and what Im experiencing now are connected in any way

BUNKIE09

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Re: GRANULOMAS AND SJS
« Reply #6 on: September 12, 2011, 07:17:35 AM »
Explorer,
The symptoms are so similar. I can never tell one from the other. I am currently trying to come down from years of steroids and having a horrible time. I can now add low blood sugar and low BP to my list of problems. Currently have a Dr apt this week to check it all out. I read that skin Lupus is a sign of Sarcoidosis also but if your lungs are clear it is probably the SJS.