Vasculitis UK
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Stopping my MMF?

Hi all.

I am a 71 year old who was diagnosed with (wegeners) MPA during Oct. 2015 after 18 months of a gradually worsening condition. It was confirmed following firstly a lung biopsy which showed up granulomas and then a kidney biopsy which showed inflammation, so along with the joint pains ect. I finally had my diagnosis!

I was then prescribed azathioprine with 20mg steroids but the aza. made me very ill so this was then changed to Mycophenalate of 2 x 500mg morning and again in the evening.

Now just over two years on and the steroids were stopped a year ago and I stayed on the MMF as prescribed until end of Oct. 2017 when my nephrologist agreed to start and reduce these too.

So, from Oct last, my MMF was reduced to half my usual dosage which I was on until my next appointment with him mid Nov. and I now take just 1 x 500mg tablet a day until Mid of Jan 2018 when he says to stop them altogether and he will next see me by end of Feb after my next blood tests.

I have been monitored every month by the Rhumy nurse with monthly bloods checked, and I see the nephrologist every 3 months. My condition has stayed steady and improved for the last year with creatinine level last reading 118 and egfr at 51.

So, although I am very happy about my results and my general health this last year, I still have some concern about actually stopping the MMF altogether, and just maintain the blood pressure tabs to keep that under control.

I am I suppose in remission, and wondering whether the meds have been reduced at a timely rate? My nephrologist doesn't believe the condition will reoccur, and I'm hoping he's right. I know there is a lot of experience here so just wondering if there are any questions I should be asking before I am taken off the regular hospital appointments list?

Wishing everyone a good 2018. x

11 Replies
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Hi tisme2,

As a general rule the evidence based guidelines to treat ANCA associated Vasculitis recommend treatment for 2 yrs if remission is achieved and then withdrawing treatment.

Your treatment seems pretty much in line with that.

You don't say whether you are PR3 or MPO positive, PR3 disease tends to relapse more than MPO. Often sinus involvement relapses more frequently than other organs.

I suspect you are going to have to try it and see. I would be surprised if you are taken off the regular appt list as you should still be under a Consultant and seen at least 6 monthly. The one thing I would recommend is that there is a clear process for getting in touch with your medical team and being seen promptly if you feel the Vasculitis is becoming active again. Most patients relapse with the symptoms they had at first presentation, but not always. If you do relapse then timely, effective treatment will be required!

Good luck and I wish you sustained, drug free remission.

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Hi Keyes.

Thank you for your response I am a bit happier still now that all seems to be in line with the recommended treatment.

I don't know what is meant by PR3 or MPO? What measurement do these refer to as this is something I can ask about on my next appointment.?

I don't have sinus involvement as far as I know!

I believe my symptoms started some years before I actually had all the painful joints ect. Some 10 years earlier all of a sudden I had tinnitus and other issues that affected blood flow but when I then visited the GP and hospital for tests they couldn't identify what was causing it. Can vasculitis start long before the onset of the more serious symptoms which didn't start with me until I was 64ish.

Initially when all this started the Doctor had me on 600mg Ibuprofen 3 times a day, then that wasn't enough so I also had 2 Butran patches on me and the occasional tramadol to try and control it for over a year! I often wondered if the Ibuprofen also contributed to the Kidney damage.

Thanks again.

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MPO and PR3 are associated with ANCA, this is a good explanation

vasculitis.org.uk/about-vas...

Usually patients are symptomatic for around 6 months before getting a diagnosis ( the prodomal period ) but ANCA associated Vasculitis is a spectrum and patients present in different ways. Some patients have a very acute presentation, others can have had symptoms for a few years.

Ibuprofen can indeed cause kidney problems and failure, especially for those getting on a bit in years!!

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Hi Keyes.

Yes I found out that Ibuprofen can have serious effects on the kidneys, considering the dosage I was on for such a long time I often wonder if my kidney damage was due more toward them than the vasculitis! My kidney function has improved quite a bit after they stopped the Ibuprofen.

Thank you for the attachment, my diagnosis is MPA so I now know that MPO relates to microscopic vasculitis and ANCA positive was confirmed at my diagnosis as you so rightly said.

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Hi. I was diagnosed with GPA (wegeners) in 2005. I was on Mychophenolate for some years. It was stopped abruptly in January last year after a respiratory infection which required hospitalisation. I was concerned that there was no gradual reduction but so far so good. I'm still on 5mg Prednisolone due to adrenal insufficiency from long term use. There's talk of trying to reduce that again. I reacted badly last time so not looking forward to that.

I was unaware of the MPO or P3 positive. Something I will ask my consultant on my next visit. I'm seen 3 monthly at the vasculitis clinic.

That and the questions you asked here maybe good starting points for your next visit.

Wishing you all the best and hopefully a long, drug free, remission.

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Hi ludo

Seems we have both learnt now from Keyes about the difference of PR3 and MPO.

All the best with your steroid reduction, this time maybe take it really slowly and reduce by as little as possible over a longer stretch of time to get used to it.

I am looking forward to being med free I must admit, fingers and toes crossed now against flair ups!!

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my husband John Mills took Mycophenolate ( MMF ) for 9 years and was switched to Methotrexate, 2 years ago which he was taking for 12 months. He finished taking the Methotrexate 12 months ago. He is considered in remission at the moment. He manage to very gradually reduce his prednisolone to zero whilst taking the MMF and has been prednisolone free for over 4 years now. John was diagnosed with Granulomatosis with Polyangiitis ( PR3 ) . If you want to chat with John anytime his email address is John.mills@vasculitis.org.uk

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Hi Suzym2u.

That's great news about John also being in remission please pass on my best wishes and continued good health to him.

I made a note of his email address in case I should need his help in the future, thank you both for your post.

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Hi tisme2

I was diagnosed with MPA in 2012 and have been on Mycolphenolate as a maintenance drug since remission (apart from an initial short but unsuccessful spell on Azathioprine (it made me ill too)). Thankfully I have remained in remission over that period. Back in November last year I jointly agreed with my consultant to try reducing the dose from 2000 mg per day to 1500 mg per day. There has been some hesitation about weaning me off Mycophenolate because I have remained ANCA (PR3) positive. This tends to increase the risk of relapse, however so far so good. I'm due to see my consultant again later this month although she hasn't indicated as yet whether I will be reducing by a further 500 mg. Your reduction seems to have been a bit quicker.

I have been free of Prednislone for around two years and had no real problems coming off that. It is everyone's goal to be drug free (especially free from those that suppress your immune system) but not everyone with vasculitis is able to ditch the maintenance drugs. You just have to suck it and see. Nothing ventured nothing gained I suppose.

I am interested to know how you get on.

Chris

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Hi Chris.

Sounds like your in a similar place to me, I have as of yesterday stopped taking the Mycophenolate altogether now so as you say, now in the suck it and see zone!

I thought that having MPA (microscopic vasculitis) that the ANCA was then read as MPO not PR3, I guess I am wrong with that assumption? I must have read Keyes explanation and thought that GPA was the PR3 ANCA?? I must ask my Doc at my next appointment which group I come under.

All the best with your Med reduction and hope all goes well for you too, I will come back to this and update how I'm doing and hopefully will have nothing going on to report!

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You are right about MPO being normally associated with MPA but I think it's in about 75% of cases. It's the same with GPA in that it's not always ANCA MPO. Hope all goes well.

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