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rebekah
06-12-2013, 05:04 AM
I have been on 50mg of Prednisone since my flare the end of February, and I had 4 Rituxan infusions in March. For those of you that had Rituxan, when did you start to lower the Prednisone? I feel like I should have started lowering it by now... once I was off Cytoxan last year I started decreasing the dose slowly. The side effects from pred are driving me insane. I can’t believe I am still on such a high dose and am ready to just start lowering it on my own against my doctor’s orders.

Barbara N
06-12-2013, 05:21 AM
I have been away for a while it is fantastic to see you are well, you gave us all quite a scare to say the least. Good luck coming off the meds. Let's try not to have anymore scares like that again.Animo, Barbara

Dirty Don
06-12-2013, 06:07 AM
If the docs are being pre-cautious, then your pred won't go down until they feel your numbers are stable and good.

rebekah
06-12-2013, 07:44 AM
Thanks, Don. I was just thinking that I should be in the process of lowering it, or if I can’t because something’s not in the normal range, I should be adjusting my meds to get things there. But from what I see things seem to look okay. I tried doing some research online, but can’t seem to concentrate being on so much prednisone. I see the new doc next week so hopefully he’ll have a better plan since my current doc doesn’t seem to care much anymore.

Barbara, glad to see you’re doing well too (I hope). :)

pwc51
06-12-2013, 08:09 AM
For my recent flare I went to 30mg, I was on zero before that. By the time I had the RTX infusions I was down to 25mg and then took 5mg off each 2 weeks - I am now on 10mg and will stay there, unless anything happens, until mid August when it will be reviewed again. I am also on MTX (20mg).

I think the flare was mild and the blood readings came down pretty quickly. I am having blood tests every 2 weeks at present.

drz
06-12-2013, 09:56 AM
I think it is pretty typical for many to go as high as felt necessary till they start to see some improvement in numbers or symptoms and then not to decrease it till the numbers and symptoms seem stable. The exception being when they know it is short term emergency like a quickly treated infection that will resolve quickly, then they drop it back to the pre-emergency level as quickly as possible. A major life treating flare or the initial treatment upon diagnosis is much different situation requiring a much more gradual approach.

Alysia
06-13-2013, 02:33 AM
I started lowering pred (which was 30mg when I had RTX) gradually about a month after it. my doc told me to lower faster then i actually did. (I have enough pred at home...)

annekat
06-13-2013, 05:34 AM
50mg. does seem like a lot to be on for that long; you'd think they could at least taper it to 30 or 20 and leave it there for awhile. Of course, I know nothing except that I was never on that high a dose for that long. And I know that you have different issues than I do, such as the kidney involvement.

annekat
06-13-2013, 05:38 AM
I started lowering pred (which was 30mg when I had RTX) gradually about a month after it. my doc told me to lower faster then i actually did. (I have enough pred at home...) I do the same thing, Alysia, and like having extra pred around for that reason. Not that I want to be on it, I just think my body knows how fast to go with tapering and I'm getting good at detecting that. My doc has wanted me to go from 12.5 to 10mg. for a long time, and I kept trying but if anything stressful would happen, I couldn't do it. Now, I have finally done it and am at a solid 10mg., and will be able to tell him that.

rebekah
06-13-2013, 06:48 AM
Thanks everyone. I got down to 20mg before having to increase to 50mg for the flare. I just feel like it's still so much to be on for so long, but I guess everyone is different. From what I remember lowering it last year my doctor does seem to like to lower the dose slower than a turtle going backwards. She just says "I'll let you know when you can lower it." But doesn't say why I can't. I have some 40mg left from before; every time I go to take my meds in the morning I'm tempted to take that one. I know I will have to be on prednisone for a long time because of the transplant (albeit a much lower dose, 5-10mg), but it would be nice to lower it to hopefully avoid the risks from long term use at a high dose.

drz
06-13-2013, 12:00 PM
Thanks everyone. I got down to 20mg before having to increase to 50mg for the flare. I just feel like it's still so much to be on for so long, but I guess everyone is different. From what I remember lowering it last year my doctor does seem to like to lower the dose slower than a turtle going backwards. She just says "I'll let you know when you can lower it." But doesn't say why I can't. I have some 40mg left from before; every time I go to take my meds in the morning I'm tempted to take that one. I know I will have to be on prednisone for a long time because of the transplant (albeit a much lower dose, 5-10mg), but it would be nice to lower it to hopefully avoid the risks from long term use at a high dose.

The doctors and we all know well the risks of high dosages of pred. The moon face and buffalo hump are just the obvious visible signs that every one can see. But it is also a very dramatic life saving drug which is necessary to use at times. Discuss your concerns with you doctors and see what they say. My vasculitis doctor today and I discussed my treatment plan to remain on maintenance drugs. He said if a patients felt strong about getting off all meds he would try it even knowing the risks they would probably flare and have a much tougher time getting the GPA back under control. Doctors try to be sensitive to patients feelings and wishes, at least it seems to me that the ones I consider good operate that way. If you flared after reducing your meds, they might also want to be more careful the next time they try taper you down on the pred.

Alysia
06-13-2013, 08:59 PM
buffalo hump .

what is it ? sound scary :confused1: :w00t:

Pete
06-13-2013, 10:49 PM
A buffalo hump is a possible side effect of prednisone. It shows up as a fatty hump on the back between the shoulders. It takes its name from the American buffalo (bison) which has a hump on its back. I believe a human buffalo hump will go away after pred is discontinued.

drz
06-14-2013, 04:32 AM
A buffalo hump is a possible side effect of prednisone. It shows up as a fatty hump on the back between the shoulders. It takes its name from the American buffalo (bison) which has a hump on its back. I believe a human buffalo hump will go away after pred is discontinued.

My hump and moon face got better or disappeared when when pred dosage got down to lower levels, I think it was around 20-30 that it started improving and appeared gone when I got down to about the 10 mg level or less.

Alysia
06-14-2013, 10:09 PM
thanks for the info, pete & drz.