rituxan?

[tcronrath]

Hi,
I have several autoiimune issues, among them celiac disease, sjogren's and probably more. I have recently flared badly (May 2011) and been on 150 mg Imuran and 15 mg Prednisone daily.  My pain is in the peripheral nerves, muscle tissue and terrible headaches.  There is a woman in my town who flared for the first time after the birth of her son (he is 6 now).  They finally diagnosed her as celiac and after more testing, Sjogren's. She has had terrible neuopathy and pain in the muscles. Hers is the opposite of mine and goes up her right leg and through her left arm-mine is all on the left side.  I have seen her out riding bikes with her son an walking the family dog and she has looked happy and healthy.  I had to know what was helping, so I called her.  She said the difference is rituxan.  She had an infusion 3 years ago and it helped, but insurance then said they would not cover it.  They tried everything med wise and nothing controlled the neuopathy.  Finally dr. tried again with insurance company and fought for it and they approved it.  She gets 2 infusions a year (1 every 6 months) and takes cellcept as well.  She said she is "normal" again, save for a numb area on her right ankle.  She has not needed prednisone for over a year at all.  This was a very sick/disabled woman who is functioning very well now.  She said rituxan may not work for everyone, but it has given her her life back. It is interesting to think about. 

[gurs]

Wow, I had alot of the same issues, esp the neuropathy...I had multiple infusions with Rituxan, and really didnt notice much of a difference, but now that I havent had it in over 1.5 years, see how it may have calmed things down a little. I know there might be some ways to get it even if your insurance doesnt approve it.

Everything is worth a try and gamble sometimes..glad it worked for someone!!!!

Gursie

[Meld256]

Hi tcronrath,

I learn something everyday here.  I had to research Rituxan a bit.  What I found stated it was used mostly for patients with Leukemia, Non-Hodgkins Lymphoma and moderate-severe RA that has not responded to other therapies.  It may be prescribed for other things, but this is what I found with a quick search.

It also made mention of fatal reactions to the injection, and this naturally should be of high concern.  Although I'm glad to hear your neighbor is doing much better.
If you have questions about a new treatment, it would be best to seek advice from your doctor.  Hopefully, they will be able to help.
Take care,
Melinda

[bloodless]

Not a med to be taken lightly. My rhuemy said he wouldn't resort to that unless my kidneys threatened to fail. He said he wouldn't give meds with the side effect of death as a possibility unless there were no other recourse.