Medication...How long?

[Widthofacircle]

I was diagnosed in April 2009. I had serious joint swelling along with kidney, lung, hearing, sinus, sight involvement. Not all of these issues at the same time but over a period of about 18 months.
I have had cyclophosphamide both IV and oral and have been on Pred,50mg tapering down and back up again as issues arose.
For the past 6 months I have been consistently kept on Cellcept, 3000mg a day plus 5mg Pred and Septrin.
I have been reasonably well except for sore eyes and a lot of sneezing and runny nose lately.
I attend a rheumatologist in a Dublin hospital and he has been successful in hetting me from a bad situation to where I am now however due to cutbacks in health services in Ireland I only get to see him every 4-6 months and sometimes I feel like I am just being kept on a maintenance dose of drugs because it is easier to leave well enough alone.
Any experiences or views on this?
Brendan

[Psyborg]

I'm no expert here, but as I understand it they won't attempt to take you off the maintenance drugs until you can get free of prednisone. At least that seems to be the way my doctor does things.

[NicShaf]

I agree with Bob, that was my understanding of maintenance drugs too, you have to be off Pred before you can come off them.

I also thought I read somewhere that Cellecept wasn't used very much anymore, because alternitives like MTX or Imuran are more effective, correct me if I'm wrong...

Have you been on 5mg of Pred for the whole 6 months?

[Widthofacircle]

Hi Nicole.
I have been on 5mg Pred for 6 months plus. I believe a number of people on here are on Cellcept
Brendan

[NicShaf]

You're right, I have seen others on Cellecept, and I know it works for some. I was just wondering if they tried one of the other maintainence options to try and get you off Pred?

[Widthofacircle]

No they have not tried anything other than Cellcept. As I said in an earlier post I think they are happy to leave well enough alone as I am reasonably well however I want to get off all medication if possible.
Brendan

[Al]

In most cases, CellCept is the alternative to Imuran, which is not well tolerated by everyone. Pred is both a triage med, in high doses, and a maintenance drug, at lower doses. We all have a yearning to be off it altogether, but it is just a dream for most of us.

It concerns me, Brendan, that you are seeing the doctor so infrequently. Usually, WG sufferers have monthly, or at worst, bi-monthly monitoring. This disease can go from inactive to full-blown flare very quickly.

Al

[Widthofacircle]

Thank you Al
I too am concerned at the infrequent consultations with the rheumatologist, it is a symptom of our depleting healthcare system here in Ireland due to the recession. I am however, comforted by the fact that I know when I feel I may be in trouble I can draw on the knowledge on this forum, not least yourself Al, and then go armed to the so called experts
Brendan

[Al]

Thank you Al
I too am concerned at the infrequent consultations with the rheumatologist, it is a symptom of our depleting healthcare system here in Ireland due to the recession. I am however, comforted by the fact that I know when I feel I may be in trouble I can draw on the knowledge on this forum, not least yourself Al, and then go armed to the so called experts
Brendan

Just another bit of evidence, Brendan, that politicians and bean counters can get in the way of problem solving, and work against enlightened self-interest.

Al

[Widthofacircle]

Just another bit of evidence, Brendan, that politicians and bean counters can get in the way of problem solving, and work against enlightened self-interest.

Al

You said it Al. Problem solving is what progress is all about.
Brendan