maintenance drugs /azathioprine/cellcept /

[quinnster]

what is generally the rule for how long you stay on these drugs ,once in remission,i know we all vary,but would like to hear other peoples views

also if you get regular rituximab every 6 months,do you still have to take one of these drugs alongside it ?

thanks

[PaulBingham]

Sorry to say that my current daily dosages of 250mg of Aza and 7mg of pred are what I expect to be on for life unless I relapse again and switch to Rituximab ,at which point I would not expect to be on Aza again, as I would anticipate that Rituximab will do the job.Whether I would also be on Pred I dont know.

I am on various other medications but these are with regard to various side effects eg blood pressure and pulminary embolisms.

You will.I am sure get many different responses

Good Luck

[PatriciaAnn]

I have been taking Aza for about four years. I also take a maintenance dose of 4mg Pred (was 5mg until a couple of months ago). Like Paul I expect to remain on Aza for some time. Rituximab has also been suggested for me if I should flare again, as I did before starting the Aza. Again my understanding is that it will be Rituximab and not a combination of another immuno-suppressant. Having said that some hospitals do use a combination. I guess it is horses for course and depends on the patient and the medical treatment plan which has been instituted for that patient.

PatriciaAnn

[vivdunstan Volunteer]

I have been on Azathioprine since 1998, and more recently added Mycophenolate Mofetil and Methotrexate. I expect to be on some combination of these for life. They keep me alive. That's fine with me.

Rituximab is not generally proven to be effective in my form of vasculitis, so I have no experience of treatment with that. I am waiting for the consultants to agree on a new experimental treatment for me, probably a different biologic therapy.

[Llinos]

I had Azathioprine on my last flare up (2005) but am not on any medication now. I consider this to be extremely lucky when I read of other people who have to take life long meds.

[laidbackreader]

I have been on azathioprine since Jan. 2004. I had a brief break in 2008 when it was thought I was in remission. After three months I had a flare and have been on it ever since. I was told it is likely i'll always need to be on it or something similar. If it keeps me alive I'm happy with that!

[AndrewT]

Dear quinnster,

I am on Azathioprine, and Prednisolone, and have been for the last sixteen years. I can't answer your question because I am on these drugs for life. I was given hours, to live, after I collapsed, and was rushed into UCH (London). I am on dialysis, three times a week, which, I'll admit, is a bit of a 'pain' but keeps me alive!

I don't know if this helps you, at all, sorry but tends to infer that these drugs are 'safe' in the longer term; if the alternative is death anyway!! This does tend to put things into perspective, I find anyway.

Please do let me, us all, know will you please?

Very best wishes,

AndrewT

[JElsom]

I took mycophenolate for about 2 and a half years and was more or less stable the entire time. I was told that they would consider taking me off it after about another year but that it would be more or less my decision as to whether I felt happy doing that. Unfortunately almost as soon as they said that to me my disease flared and has been pretty active for a couple of years. After a course of cyclophosphamide I'm now on methotrexate and things seem to be getting back to a stable state. My consultant said to me last time I saw her that I would be on it for at least another 2 years but I got the impression she didn't really expect me to come off it completely.

I think it really depends very much on the progression/stability of your condition. And getting the right drug combination in the first place is difficult and it can change over time. It's never easy!

[quinnster]

thanks everyone,as usual,answers were most helpful