Use of Imuran for Sjs

[jenkay]

I'm having a revelation over here over here even though I already had a good idea.

I was dx with sle 4 years ago but my symptoms are very ms like, was dx with sjs last may...

I have been a regular on a major lupus forum for years where I always stood out with a handful of others with strange and significant neurological symptoms...

Now I come to this sjs forum and everyone is talking about the same issues I have, so it seems it is more due to the sjs than the lupus...

Here is my confusing question for anyone who can help...

I take several drugs, plaqunil, pred, yada yada and have tried methotrexate which made me more sick than better (6 mos) so my rheumy has been debating using imuran for a long time especially since I was dx with sjs last may... does imuran help the neuro symptoms?  Also, with sjs there is a 20 fold risk of getting lymphoma compared to the general public and since imuran also increase that risk how do you weight the benefits vs the potential side effects.  If you take the imuran and get the sjs better under control are you then decreasing your overall risk for lymphoma???

Am I making any sense?  I've seen many neuros and they don't seem to know much about sjs but I'm going to see someone who does in June so we'll look for answers there as well.

Hope to hear from those of you who are going down this road (or have been there

Thanks, Jen

[Chickpea]

Hi Jen

It's good to meet you.  I'm one of the Sjoggies who arrived here after an MS diagnosis that didn't fit after a couple of years and, like you, I found myself with people who matched my neuro issues.  What a relief!

I've been on Plaquenil and Prednisolone for 8 months, along with various pain meds and other bits and pieces.  A couple of weeks later I started CellCept which I adjusted to ok.  However, this combination of drugs isn't doing anything very much so I'm due to start on Cytoxan (cyclophosphamide) soon.  There are issues with all these drugs: for example, CellCept increases your chance of getting skin cancer; Cytoxan does the same with bladder cancer.  Many people here have found immunosuppressants help with neuro symptoms;  it's just a case of trial and error until you find the right one.  The increased risk of cancers seems to be the price we have to pay.  On the plus side we are checked regularly so if anything does develop we should get treatment quickly.

You're asking the right question about Imuran and lymphoma, but it's impossible to answer.  The statistical variables are so small I'm not sure the maths could be done with these comparisons.  I think it comes down to individual choice about what price you're prepared to pay for the chance of putting SjS into remission for a while.  Have you been told the benefits would be anything more than that?

Let us know how you get on with the new specialist.

Thinking of you - Chickpea

[Victoria05202000]

I take cellcept which is another big autoimmune supressant drug normally used after transplant. I have had positive results from it.  I feel like all my symptoms have improved....still have fatigue badly at times, but that can be from my kidneys wreaking havoc. (they don't know how to behave)  

Yes, we have an increased risk for lymphoma especially with the Imuran or Cellcept. It is a risk and a trade-out that we must think about.  It was an easy decision for me because I am currently on the kidney transplant list and absolutely need cellcept to not reject the kidney.

I was reassured by my Docs that I will be checked frequently and Lymphoma when caught in the early stages is almost always treatable.  I am not a doctor and to be honest I have not researched what they have told me.....BUT I will.

Take CAre!
Vicky

[jenkay]

Thank you so much.  I really appreciate your insight.  I'll be asking the same questions of the specialist and I'll share when I get back.

[missyb]

 Hi, I was diagnosed with some kind of mysterious connective tissue disease 5 years ago at age 37 by a rheum and placed on imuran. He felt it was unimportant to determine the exact disease b/c he treats them alll the same. I was on it for 4 years.
I read the side effects, and understood the increased chance of lymphoma. I was just so grateful to have a Dr finally find something, and help me I did not question worrying about what it was exactly for 4 years. It reduced my symptoms about 50-60% which made life a lot easier to live. However, I still had a lot of joint pain. A LOT. 1 year and 1/2 ago my brother had Hodgkin's lymphoma. He was the first in our family to ever have a cancer. The lymphoma part made me a little more nervous, but I didn't stop the imuran. The joint pain was really painful in the mornings and my husband was really frustrated with seeing me limp around and ordered a book for me , Healing Arthritis Naturally by Dr Henry Brownstein. Through that book I visited some web sites and found a referral to a Dr here in town. So, last Summer I finally got a 2nd opinion from that  rheum who did firmly diagnose primary Sjogren's with systemic involvement.it was such surprise to hear it was an actual thing! When I asked what he thought about  the risk factors I was accumulating towards lymphoma because of the combined risk of the increase chance with the family link and the Imuran, he surprised (shocked I guess) me by letting me know that with the Sjs I was even MORE likely to have a lymphoma than with those two put together and promptly began weaning me off Imuran.  He is an interesting guy, a board certified Rheum MD who practices naturopathy as the first line. Started me on a strict diet, minocin, and some natural supplements and I have been managing better than ever. I'd say I am at about 85% now of where I used to be, I can still accomplish as much, but it just wears me out more and takes longer to recoup.
So anyways, that is my story w/ the imuran and sjs 

[jenkay]

Missy,

That is very interesting, I sent you a personal message to get more information but I'm not sure that it sent??