Rituximab

[Sangye]

Nicole,
Jolanta is correct. Even though a new study just showed rtx to be as effective (and slightly moreso) than ctx in inducing remission, the cost prevents it from being used first. I'd be surprised if your insurance authorized it without a history of failure on ctx. This is awful, but true.

PML is caused by a virus that most people have dormant in their bodies. If you become immune-compromised, that virus can become active and cause PML. It's a risk with any of the immune-suppressants--ctx, Cellcept, Rtx. (There's also a risk of developing it just from being immune-compromised. That happens in people with AIDS.) The risk is very low, but because it's a rapidly fatal condition, doctors must educate patients on it.

BTW, my name is actually Sangye! (It's my Buddhist name, not my birth name)

[ticklytoes]

thats a bummer...al i can do is hope that my ins. is really good, and not so strict i guess ;0( Like i said, im in remission, but i have to be on mtx and 8mg of pred to keep it...I would love to be on lower doses of pred, ya know? and, my ENT at Vanderbilt also wants me to be low so he knows that if i taper and he takes my trach out, that it isnt gonna swell back. Nicole

[timbo vic aust]

i take my hat off to all you guys because it is you all the long term sufferers off this rotten disease that has made it so much easier for newly diagnosed people like myself.you all have done the hard yards and trialled all these nasty drugs and medicines and put yourselves through hell on earth just so people like myself get straight onto the newer drugs as sangye says ritux is brilliant i also can say how good it is but i cant comment on the others ctx etc... because i have never had them from what everyone says i would'nt want them either the only thing i cant handle is the pred they have cut me back to 37.5mg a day but it gives me a pounding heart beat, the shakes, bad tremors in my legs, i still have the bad fatigued legs and knee joint pain sitting moving around or totally resting does not make a difference to my legs. it's the most frustrating part of the disease for me i am awaiting some kidney testing at the moment so hopefully it will be good news their for those who dont know i have all aspect of wg except the kidneys . back to ritux as i said i am one of the lucky ones to receive rtx as a first up drug my rheaumy pushed for it for me from day 1 but said we may have to fall back on to the nasty one ctx . also from what i read on the forum it sounds like it is a lot harder to get rtx in the states canada and england so once again i thank all the long term battlers of this disease for making it an easier road for newbies like myself

[boomer]

i started taking Imuran (Azathioprine) after the Cytoxan (Cyclophosphamide) as a maintenance drug. As for the Bactrim, I take it for Infections. Im in a rut and a flare up and I am going to talk to the doc. Thank you.

[elephant]

Hi Boomer, welcome! What kind of flare are you having? How long have you been on Imuran? I take Bactrim every other day to keep sinus infections at bay.

[Jack]

timbo - might be worth trying Atenolol for the pounding heart beat. I only take a very small dose, but I can't get by without it.

[timbo vic aust]

thanks jack i will ask the doc about that at my next visit

[boomer]

Thank you I have a doc appoint on the 6th i will ask him about it thank you. That cleared up one of my questions. The other is :is it the disease or the med that cause the heart pounding.

[boomer]

Vomiting, nausea, headaches, joint pain I see my doc on the 6th. Ive been on Imuran for about 5 months.

[Jack]

Wish I knew!

I take so many pills and have suffered so many side effects that I have no idea which of my symptoms are now caused by Wegener's. I suspect that most of my troubles are now due to the medication.