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jeriorleans
04-25-2011, 01:20 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, 01:37 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, 10:56 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
04-25-2011, 11:07 PM
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, 12:52 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, 05:55 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, 06:00 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, 06:25 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.

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, 06:26 AM
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?

pberggren1
04-26-2011, 06:31 AM
I am going to ask my doc this week if he thinks doing 2 infusions instead of 4 would be as beneficial.

Meredith
04-26-2011, 06:33 AM
Questioned my doctor when he said 4 (I thought it would be 2) and he said he felt that was what was needed. Still not off cytoxan, in fact he told me I would not be taken off of it for a while. Guess it depends on my tests results when I go back after I have the treatments.

pberggren1
04-26-2011, 06:35 AM
How long and at what dose have you been on ctx Meredith?

Meredith
04-26-2011, 06:36 AM
Probably 2 years now (2 pills in the morning 50mg).

pberggren1
04-26-2011, 06:38 AM
So you have been on ctx for 2 years straight at 100mg per day? YIKES! What is your doctors reasoning behind this? Are you having severe symptoms that will not go away?

delorisdoe
04-26-2011, 06:43 AM
This is how I was treated for wg and seems to no longer to be the way to go. It put me into a lengthy unmedicated remission but the question is at what cost.

pberggren1
04-26-2011, 06:44 AM
This is how I was treated for wg and seems to no longer to be the way to go. It put me into a lengthy unmedicated remission but the question is at what cost.

Ya, at what cost is right! My doc does not like to keep anyone on ctx longer that 3 months unless absolutely neccessary. I trust him because he is one of the worlds few Wegs specialists.

Meredith
04-26-2011, 06:45 AM
Can't get good test results. Tried celcept and no luck. Cytoxan is the only thing that makes me feel half way normal.

pberggren1
04-26-2011, 06:49 AM
This totally sucks Meredith. What are your numbers like right now? ESR, CRP, Creatinine, Renal, Liver, CBC, WCC, etc? ANCA? I sure hope the rtx works for you.

Meredith
04-26-2011, 06:54 AM
No problems except my ANCA will not go down. Have never had lung, liver, kidney problems. Have always wondered since I caught it after the first flare up and no damage was done if that is why my other readings have been ok.

pberggren1
04-26-2011, 06:58 AM
Meredith, when you tried to go off ctx in the past what symptoms came back and at what intensity and which blood numbers rose?

Meredith
04-26-2011, 07:10 AM
Always the ANCA - I would have to pull my sheets to tell you. Only thing new the doctor is checking is the Vitamin D, mainly due to the bone loss I had I am sure and was due to the prednisone. One thing I forgot was is it seems to be localizing in my eye(s). The prednisone makes it better but it happened twice last year and he was not happy about it. So now I get to add my eye doctor to the list of who I see. The only system I have when I know I am not doing well is I am so tired, especially in the mornings.

pberggren1
04-26-2011, 07:12 AM
It sounds to me that you have been on ctx for way too long needlessly. Are you seeing a Wegs specialist?

Meredith
04-26-2011, 07:14 AM
Yes - he is suppose to be one of the best in the southeast.

pberggren1
04-26-2011, 07:27 AM
May I ask his name and what center he is at?

NicShaf
04-26-2011, 07:52 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).

I see, I didn't know that, but I had more than sinus involvement at dx, so MTX was presented to me as a drug for later in my treatment, RTX and CTX were my only choices at the time. You totally have a point, most people on here probably are more serious cases, hence their need to be here:)

JanW
04-26-2011, 07:55 AM
I would be very suspicious of being treated on c-ANCA readings alone. Mine are high (don't know how high in that my doc's lab actually doesn't quantify it -- the reading is high or abnormally high and mine is the latter) and my PR3 is always around 60 (to give you an idea I have seen people on her in the single digits who are much, much sicker than I). I started out at 80 and haven't budged from 60 since maybe May and have been completely asymptomatic. Am reducing my meds (mtx only) by 2.5 mg every six weeks or so, provided bloods (CRP, ESR) are normal. I feel great. There are a few here who feel that the ANCA levels closely match disease activity, but that's not the case for many of us. I assume that you are still highly symptomatic and that's why he is going with ctx and rtx combo, which I have also not heard of (although I have heard of tapering from one drug to another with mtx and rtx. Highly unusual choice to be on ctx for so long, if other levels were/are normal.

pberggren1
04-26-2011, 08:28 AM
My ANCA used to be relialble but with my recent flare the C-ANCA stayed very low but I was obviously flaring so back on ctx and pred and improved right away. My doc is not sure why the ANCA was not reliable this time but he did say that it could be in the future again but he doubts it and will test for it now and then anyway. I thought maybe it has something to do the the lung infection and antibiotics and he thought the same but there is no way of knowing for sure.

ScreaminMeanie
04-28-2011, 03:38 AM
My first bout with this 20 years ago, they took me off the CTX only because I developed Pneumocystis pneumonia. I tapered off Medrol over the next four months, and my c-ANCA levels were still very high, but I went into remission for close to 19 years. I think I would ask my doc to try to get off CTX and see how it goes.

Meredith
04-28-2011, 03:51 AM
Dr. Andrew Laster - Arthritis & Osteoporosis Consultants of the Carolinas