Anyone Rtx without maintenance?

[mrtmeo]

My mom had leukopenia after taking the Imuran, so she is no longer on it, but on 10mg prednisone.
Is there anyone that uses Rituxan every 4 months or when their b cells regenerate instead of using a maintenance immunosuppressant?

My mom's nephrologist wants my mom to go back on the Imuran eventually, but not sure it is necessary or not.

[loisann11]

I just asked the same question in a different post. No answers yet. I saw a women on You Tube who said she was doing this and wanted to know more. It was suggested I might contact her. Not sure how that would go but may try that. Her video was done by the Vasculitis awareness. You can search on Kathy messenger to hear her story.

[loisann11]

vasculitisawareness - YouTube (http://www.youtube.com/channel/UCFpatNPxjs2J0Q7smvkpAug) The video can be found here. Lots of other good ones too.

[morningsunshine]

Hi there,

I just responded to this question on Loisann's thread.

here's a copy of that reply:
I had the 4 infusions of RTX in June and my B-Cell count is at zero. My doctors are monitoring my B-Cell count and as soon as they return, I'll get another infusion of RTX (continuing on indefinitely). My nephrologist said that he has seen the time between RTX infusions be anywhere from 3 months to 24 months, but on average it's about 6 months. So right now we're waiting to see how many months I'll need between RTX infusions.

As a caveat: I haven't entered remission yet and I'm still on 17.5mg MTX weekly, 10mg prednisone daily, but I know the long-term plan for me (over the course of the next two years) is to taper off of the MTX and (fingers crossed) pred and only do RTX infusions whenever my B Cells return.

So no direct experience yet, but the goal is for RTX to be my primary maintenance drug!

[Alias]

I was shown a study from the British Society for Rheumatology that says RTX can be used for maintenance therapy, with treatment at fixed intervals (such as every 4-6 months) for two years or upon evidence of relapse. So, that seems like exactly what Morningsunshine's doctor is aiming for. I believe I put up a PDF of that article in a previous post.

In my case, I have limited disease (sinus and ears) and I have done very well on MTX. I expect that to be my maintenance drug for the next few years, barring any serious relapse or extension of disease that would cause me to turn to RTX or something else. Cost is an issue for me, and RTX is hugely expensive compared to MTX.

[loisann11]

Not sure if they are checking my b-cell count or not. I just started the Imuran and seem to be without side effects so far. But I just don't like the idea of doing any of these drugs long term. My lungs and kidneys were included by this disease but both are doing fine. My nephrologist almost said I was in remission but not sure what that even means if you always have to take some of these drugs. Thinking of finding a Rheumatologist so I have a main doc to go to since most on here say that who knows the most about this disease. Thanks

[mrtmeo]

Not sure if they are checking my b-cell count or not. I just started the Imuran and seem to be without side effects so far. But I just don't like the idea of doing any of these drugs long term. My lungs and kidneys were included by this disease but both are doing fine. My nephrologist almost said I was in remission but not sure what that even means if you always have to take some of these drugs. Thinking of finding a Rheumatologist so I have a main doc to go to since most on here say that who knows the most about this disease. Thanks

Hi Loisann,
If you were anca positive with either mpo or pr3 antibodies, these can be checked to find out if you are in remission or not.

[drz]

The term remission can mean different things and varies some what from doctor to doctor. A drug induced remission can mean the current meds, often a maintenance dosage, are managing or controlling the Wegs adequately so no new or different treatment is recommended or needed. It might also mean you have a normal ANCA level again if it was elevated when Wegs was more active. ANCA numbers don't always correspond with presence of Wegs or Weg activity as some readers here know from their experience.

Residual symptoms may still be present in a drug induced remission, often from damage caused by Wegs, but the residual symptoms are either stable or decreasing. These symptoms can wax and wane without being considered a flare. When new meds or treatment are needed, it is then considered a flare of Wegs.

A drug free remission usually means no Weg symptoms or elevated lab indicators and no current drugs to treat or manage Wegs or its symptoms. This is everyone's dream or hope but few here attain it. Most who do are busy resuming their normal lives and don't feel need to seek out such a support forum.


Not sure if they are checking my b-cell count or not. I just started the Imuran and seem to be without side effects so far. But I just don't like the idea of doing any of these drugs long term. My lungs and kidneys were included by this disease but both are doing fine. My nephrologist almost said I was in remission but not sure what that even means if you always have to take some of these drugs. Thinking of finding a Rheumatologist so I have a main doc to go to since most on here say that who knows the most about this disease. Thanks