I have a question about Steven Johnson Syndrome. Way back (long time ago), Alan was hospitalized for 10 days, in isolation because he came down with a BODY-WIDE RASH, his face ballooned up, and I kept telling the people in the ER that he had just began Celebrex a few days before this happened. They would not listen, they called in specialists and were examining him and he was getting bigger, and the rash was spreading and I was going "For god's sake, give him a benadryl".

They were clucking and going "Maybe Rocky Mountain Spotted fever, maybe this, then people began showing up in Haz Mat suits" They put Alan in isolation for a week and no one entered that room without being covered from head to to. They began giving him benadyl and lo and behold HE GOT BETTER. I have photos of him from that time. He looked like a swollen lobster in his face and the rash on his body was HORRIBLE.

I remember looking up reactions to celebrex and cox 2 inhibitors and read about Steven Johnson Syndrome.

So I said to myself "oh, he has Steven Johnson Syndrome". The doctors just told us "never give him Celebrex again or any sulfates". So we never did.

I have been researching Elavil and it can cause Steven Johnson Syndrome. But...and here is my confusion... did Alan actually have this? or did he just have a severe allergic reaction to the Celebrex?

I ask this because when one reads about Steven Johnson Syndrome it says says "severe body wide rash, (what Alan had) but then it goes on to further state "peeling of the skin and it can be fatal". Alan's skin never peeled, it just was a bad rash from head to toe, his face was completely beet red, and ballooned. When given the benadryl over the course of 5 days, his whole body slowly returned to normal, they took him out of isolation and said it was an allergic reaction to the Celebrex.

So did Alan ever really have Steven Johnson Syndrome, or could it have been a very mild case of Steven Johnson syndrome, or just a severe allergic reaction to the Celebrex. Or are the two the same thing?

I just want some clarification if anyone knows the answer.

Thanks much

Melody

There are degrees of the syndrome.

It is most common with sulfonamide based products.

This is an interesting article... near the bottom it lists Trileptal as a potential problem, in some people.

At the bottom of the article it states:
It is not only drugs that can cause this reaction therefore:
http://emedicine.medscape.com/article/756523-overview

i got the same reaction as Alan way back in the last century, 1977. I had mono (they think) and they gave me penicillin because they thought i had german measles and i had a really bad allergic reaction, wound up in Elmhurst hospital in my own room for 6 days. I looked like joe frazier after the first Ali fight. Believe it or not they sent me home two days in a row that i went to the emergency room. I was so weak i didnt care anymore. i had been sick for a month by then, first not being able to eat and then not being able to drink. The third time i told them if you dont admit me just leave me in the corner to die. THEN i got iv fluids and nutrition.

Vitamin B1 also helped me with the burning and tingling though i never really had that much tingling. I used first the thiamine form and then the benfotiamine type. Copuldnt hurt to try this.

Wellbutrin also helped when i was using it about 6 years ago. It works in a different way from other antidepressants and had very little if any side effects. Might be worth a shot.

Hi. Alan has tried Welbutrin. Did nothing. He's been on zoloft for YEARS and it helps with his depression.

I just googled Steven Johnson syndrome and oh my god, I must have said Oh my god a thousand times as I saw the photos.

He didn't have any of the raised blister type or discoloration rashes. Alan's face ballooned up, his throat was starting to close, his body (his whole body, had this rash). I thought I had those photos of Alan on my computer. If I find any I'll post them. I don't have a scanner any more. But jeez, those poor people. I never knew Steven Johnson could present like that.

Good Lord.

Melody
P.S. Thanks Mrs. D for the info.

I a sorry about your flare Mel. I will send you some warm weather from FL. Though we have been getting rain. I can tell the weather with my body too though I can't find the perfect place it seems. One is too humid,another too cold,another too dry. I need my own neuropathy island. Heard Hawaii is good too bad it costs so much.

As for your husband has he maybe tried to start a med on a very low dose? When I first developed this some doctors started me on such high doses that the side effects were bad. Then my last doctor did it slow and it seemed to lessen the side issues. From what one doctor told me it is not always about body wieght and how much of a med a person is rx. I am not an expert but she said it is about how one metabolises it. Maybe Mrs D or someone else can chime in. Since lidocaine helps it sounds like has he thought of taking the oral? I think I recall being told there is one. Or maybe the infusions? I had one and though it did not help me for some it does. I had no side effects from it. They have a nurse with you the whole time so if you do have side effects they bring the dose down or stop it.

Daniella:

Infusions of what?

Alan did the IVIG thing for over 2 years. It did not do anything for the pain, and then we found out IT'S NOT FOR PAIN, it's for the immune system, and balance, etc.

He went on it because he was told it might help his pain. It did nothing for his pain and I don't think he should have been told it would help his pain.

It's for people with MS, and CIDP, which they thought he had but later on they said "no he doesn't have CIDP, so he is still idiopathic"

Oh well

Thanks much

Melody

I am talking about lidocaine infusions. I thought that was for pain. The iving I thought was for auto immune. I may be confused though. When I tried the lidocaine infusion it was told to me it was for pain control though.

Alan's ivig was Gamagobulin, not lidocain. Never knew they gave lidocain infusions.

Melody

For some I was told and heard from a few it helped with pain. The plan was that if they helped I would have them on a regular basis and gradually increase time inbetween. You may want to talk to Alans doctor about them. It was my pain anestesologist who did it.

Wow, I learn something new from you guys every single time I come on these forums.

I will definitely look into this. Thanks so much

Melody