When, if ever, do we begin medication withdrawal?

[Ayla]

Can anyone tell me when it is normal to reduce immunosupressant drugs and/or steroids (I know these should not be reduced together!)?

I have been on prednisolone and mycophenolate mofetil for 2 years now and was expecting some long withdrawal from one or both to begin this year as I have been symptom free for around 9 months. I am now down to 7mg of pred a day (reduced to this 6 months ago) and have been advised not to reduce further. I am also on 1500mg of the MFM. I was told by my specialist that he thinks I will be on these doses for life, which horrifies me as I know there are cancer risks associated with long term use, not to mention the risk from infections!

Is my specialist up to date on current thinking? Any advice, anyone?

Ayla

[John_Mills Volunteer]

This is a very interesting question! The new (as yet unpublished) guidelines suggest that medication should be cautiously withdrawn two years after "on medication" remission has been achieved. This assessment should be based on a combination of clinical signs and symptoms and laboratory results BUT this is predicated on the acceptance of a 50% risk of referral within 5 years. So it is a balancing exercise between controlling the disease and avoiding the side effects of the medication.

I don't usually quote my own experience, but only after 12 years am I slowly being weaned off Myco, having come off pred only 2 years ago. But I've never had a relapse and life has been good.

John

[Dave_Buzzey_B]

Hi Ayla, I think you'll find this all depends on your treatment team and how severe your symptoms were. Also your ongoing blood test results can play a big factor. Through people I have spoken to web some have been on their meds for fifteen years or more and some are going to be on them for life.

I think it all depends on you and your team. I unfortunately have been through the whole scope of drugs and currently am on Pred and Mycophen which aren't working for me and am awaiting my TB screening results to be cleared so I can go on Ritux, But unlike you although i have had WG for nearly six years, it took three years for me to get a firm diagnosis as I was told I had different conditions and went through the treatment for them until by chance a consultant I had to see about something entirely different, questioned me about the severe rash I had and any other symptoms, then had me referred to a specialist rhuematology doctor as he thought it was vasculitus. Now my consultant has told me it could be very many years yet until I can come of my Pred and Methatextrate (I want to come of the pred more as I am one of those unfortunate ones who weight balloons with steriods) as he wants them to run concurrent with the retux infusions.

I think if you really feel like your in remission and no longer need either the dosage or medication at all, you should talk to your team leader and see how he feels. I hope you can come of them soon.

Dave

[LynneJ Vasculitis UK Volunteer]

Hi Ayla

I am on Azathioprine only now and my Rheumatologist says in 2015 we will look at reducing it. So that will be 5 years from diagnosis.

Not sure how I feel about that. I know that I will be very nervous about coming off it.

Lynne

[Hidden]

Hi Ayla, I am on 1,500 mgs myco-phen a day and 10 mgs prednisolone and lots of other drugs aaaaah. I would really like to come off them all but because I keep getting 'flares' I am afraid so I really want now to understand what these drugs are doing and if they are working. I do not know but at this moment I have to 'trust the Docs' that the treatment is OK for me and everyone else. x S&J

[JacquiM Volunteer]

Hi Ayla,

I believe it would depend on how much damage was done and, of course, everyone is different.

I have a bad feeling that I will never be free of medication, so can totally understand how the thought of a lifetime of medication is horrendous, particularly when I had never been ill before this disease descended on me.

Best wishes

Jx

[Ayla Volunteer]

Thank you, everyone, for the helpful replies. It seems this is a case by case basis and, regrettably, most of us will be on the nasty stuff for years if not for ever. The docs in the USA seem more eager to withdraw the drugs once remission has been achieved for a couple of years at least and they remark, 'I know what to do if you do relapse!' I wonder if our medics are being a little too cautious in most cases? Maybe I just want to return to something like normal though I certainly do not want to go back to feeling as ill as I did at the start 9 years ago!

[John_Mills Volunteer]

John and I were at a presentation in Preston a year or so ago..and the doctors giving the presentation were excellent and they discussed this ....withdrawing drugs and seeing how things go ... and in some cases I believe they do this after mutual discussion and a joint decision with the patient... but the main concern these doctors had were that if patients did relapse after withdrawing the drugs a good % never quite returned to how they were before and some were worse... so he said that it was a fine balance... . people have contacted us who have been "drug free" for up to 8 years or so but then suffered a big relapse and had to start all over again with the cylophos etc.... it is something which should be discussed with your consultant.. John was never been able to come off the drugs and has had to reduce extremely slowly... 12 years now... but he has not taken prednisolone for almost 2 years and he reduced his Mycophenolate in September last year and again in February this year. So just maybe he will be able to be drug free before very long.

Susan