dangers of rixuan

**jeriorleans** · 04-25-2011, 02:20 PM

Everyone seems to think its great news that Rixutan is approved for Wegeners. The side effects seem worse than Methotrexate, Comments?

**ArlaMo** · 04-25-2011, 02:37 PM

I just had my second infusion this week and have had no side effects at all other than being a little tired.

**Sangye** · 04-25-2011, 11:56 PM

Jeriorleans, do you mean the risks? I think there are only a couple of us in this group who have the extreme weakness side effects. Everyone else seems to have nothing at all (which totally blows my mind).

**JanW** · 04-26-2011, 12:07 AM

Jeri - I seem to see a lot more people here with mtx side effects -- tiredness and nausea especially. I'm on it, have never had any problems with it, but it seems like both here and on other boards people complain about it quite a bit (it also may be because it's one of the most common drugs to be on).

I think Sangye seems to have the worst effects from rtx, and a few others have some effects from the high dose pred. Overall, my doc says that his patient group has tolerated it really well, better than anything else (except mtx).

**NicShaf** · 04-26-2011, 01:52 AM

I agree that the risks seem scary, but can we really compare RTX to MTX? I would compare RTX more to CTX as an inital treatment drug rather than MTX as a maintainence drug.
It does seem like most people tolerate RTX well, I think it is awesome news that it should now be easier to get approval for it since the FDA approved.

**JanW** · 04-26-2011, 06:55 AM

NicShaf -- mtx can be (and is) used as an initial treatment drug for cases of mild to moderate WG (such as mine). I think I have noticed an uptick in people here using it as a started drug...but I can still only speculate that more people here tend to be on the 'big guns' because people in a support group such as this are likely self-selected to have a more serious form of the disease and be seeking out answers (that is, if all WG ever gave you were nosebleeds and occasional tiredness, you'd go about living your life and probably wouldn't think of yourself as part of a 'WG community.').

My doc does compare rtx to mtx (though certainly NOT to ctx) with the belief that one is safe as the other (unproven long term, he knows) and you don't run the liver risks with rtx that you do with mtx. He wants to switch me to rtx if we can't make the mtx reduction work so that I can get my nose fixed (surgeon won't do it on mtx because it's not a technical 'drug free' remission).

**Meredith** · 04-26-2011, 07:00 AM

Had my 2nd treatment last Friday - two more to go, no problems except I was constipated (I am really sure everyone wanted to hear that!) but it happened for 2 days after each treatment so it must be Rituxan. Just took some over the counter meds and went away.

**Chris G** · 04-26-2011, 07:25 AM

Originally Posted by Meredith

Had my 2nd treatment last Friday - two more to go, no problems except I was constipated (I am really sure everyone wanted to hear that!) but it happened for 2 days after each treatment so it must be Rituxan. Just took some over the counter meds and went away.

Four rounds of rtx, eh?.......do you know why you're having 4 vs. 2? It seems to vary widely here on the board.

I should be having rtx in the next couple of weeks, and I failed to ask my doc how many rounds it would be. I still don't have a real good answer as to why some do 2, and some do 4. Anyone????

**Palmyra** · 04-26-2011, 07:26 AM

Originally Posted by Sangye

Jeriorleans, do you mean the risks? I think there are only a couple of us in this group who have the extreme weakness side effects. Everyone else seems to have nothing at all (which totally blows my mind).

I agree with Sangye (sorry Sangye, as it appears you do have issues with the extreme weakness,) In my daughter's case, MTX w/ pred alone were tried initially, and had no effect in controlling her disease, while still causing some minor side effects.

The switch to RTX led to a tapper completely off pred for some years now. There are some significant risk factors that appear to be associated with RTX use, but I have yet to hear report of any cases personally, and they will hopefully remain infrequent. I am keeping my fingers crossed!

I think many individuals on these sites have had serious side effects with Cytoxin (bladder and fertility issues). We know individuals cannot tolerate CTX for prolonged periods.

What we don't know is how long folks can take RTX. Do we? Are there any good studies out there on long term use and morbidity?