continuing treatment

[ehughes]

I was diagnosed Feb2011....been on mycophenelate mofeteil more or lesss since then.IF the vasculitis has gone...but am still taking this medication will this harm the body...ie if I`m still taking it unneccessarily....wishful thinking maybe....have been in remission for 2 years...

[Ayla Volunteer]

Me, too! Have been on mycophenalate mofetil for two years, in remission for the same amount of time, with no sign of withdrawal. My consultant says I am likely to be on it for life! I, too, worry about the long term effect on my body but maybe we have no choice but to take it? What does your consultant say?

Ayla

[ehughes in reply to Ayla]

Hi Ayla,thanks for your reply,my Consultant is in no hurry to take me off/or wean me off,although he has mentioned it in the past...I would like to be off this medication,but suppose I will become hyper at every ache and pain !!

[PatriciaAnn]

Hi

Sorry, fairly long reply.

"If the vasculitis has gone" - now there is a term to conjure with. I'm afraid the majority of the vasculitides do not "go", they are first "induced" into remission, and then once in remission they are held there (hopefully) with maintenance therapy, ie your mycophenolate.

I would imagine your consultant will keep you on this sort of medication for a while, monitoring your bloods etc., physical examination, and taking note of your history when he sees you. With some of us the medication can be stopped after a number of years provided there hasn't been a relapse. Some of us are not so lucky.

These drugs we take are not nice, and all drugs have side effects. Unfortunately, if we want to gain remission, and if we want to stay that way, then I'm afraid we have no option but to "keep taking the tablets".

I would suggest you have a word with your consultant at your next appointment as obviously this is something which is causing you some concern. Just ask what the treatment plan is for your future medical care and, if you aren't sure what he is meaning, then ask again.

If it helps any, I have been taking either mycophenolate or azathioprine since I came off Cyclophosphamide, and I finished the cyclo in 2004. I was doing fine until about 2009 when I flared, and my consultant (and I) feel it is better for me to stay on my present drug regime for a while longer. I don't like taking the drugs, and I am aware of the POSSIBLE long term consequences, but having flared and having gone back to square one, I know which I prefer.

Hope that helps. Take care.

PatriciaAnn

[ehughes in reply to PatriciaAnn]

Hi Patricia-Ann thanks for your reply...I know you are right,but I still have this fixation about my contracting WG in the first place...I believe it was induced by the ¬Flu jab....or possibly Migralieve to which I became addicted....I will go along with whatever my Consultant suggests,and am certainly not going to push to be taken off the medication,dont want to go through that scenario again !!

[kath12341]

Hi i to am in drug induced remission since diagnosed since 2007 on mycophenolate steroids etc Am waiting for respitatory consult but am having bladder problems, discomfort but rheumatolgy consultant dismissed as one of the side affect of mycophnolate. if gets work will have to see about altering meds.

[ehughes]

Hi Kath thanks for your reply...are you on both Mycophenelate & steroids?Ive been off steroids since JUly last year...I am currently suffering very badly with Joint pains,which is shown on the Mycophenelate info sheet as being one of the side effects...viscous circle isnt it ??