MMF Withdrawals or not

[tisme2]

Diagnosed with MPA wegners with CKD 3 years ago and having been on prednisolone with mycophenolate over the last two years, then tapered off the pred, and now since mid January have also stopped taking the mycophenolate because all my blood tests showed as stable over the last year. So all I take now is a couple of tabs to control blood pressure.

Over the last month I have come down with a dry cough, scratchy eyes and lots of sneezing and fatigue. Could these symptoms be linked to my stopping the mmf, are there any withdrawal effects of coming off this drug which I should be aware of?

Thanks for any info.

[Chris-Bromsgrove]

Hi Tisme2. I was diagnosed with MPA in 2012. I stopped Pred in 2016 and I'm now in the process of tapering off Mycophenolate. I dropped from 2000 mg to 1500 in November last year and then to 1000 my at beginning of February. I still have positive ANCA so I guess that’s why they are taking it gradually. So far I've not noticed any difference. Hopefully they are monitoring your bloods etc to check for any sign of relapse. Chris

[tisme2 in reply to Chris-Bromsgrove]

Hi Chris. I too started cutting down the Mycophenolate last Oct reduced from the usual 2000 mg daily dose was taken down to 1000 in Oct. 2017 then down to 500 until Mid Jan. when I stopped. I see a Nephrologist regularly and he will continue monitoring blood samples he says for the rest of life! Since my last appointment he has now registered me for Online Patient View so I can see my results at home after every blood test!

I hope these issues I have at the moment are going to pass once my system gets used to the lack of MMF, I will though take AmyS1's advice and ring if they persist much longer!

All the best with your med reductions, my thoughts are that if we can get along ok without the meds, while still being monitored, it could be for the better.

Bri.

[AmyS1]

Sounds like a possible relapse. Talk to someone on the helpline.

[tisme2 in reply to AmyS1]

Hi Amy. Thanks for your response and I shall indeed take your advice if things don't improve soon, hoping I am having withdrawals of sorts after taking MMF for so long and it will pass.

Bri.

[Germarey]

Is it possible it could be your blood pressure medication. Some give you a really bad dry cough.

[tisme2 in reply to Germarey]

I don't think its the BP tabs as I also have red scratchy dry eyes and feeling tired even though I'm sleeping well.

[jayf]

Fatigue, conjunctivitis (without infection), sweats, arthritis, pain between the ribs, urethritis, sweats, wanting to sleep 24/7, headaches, bit of depression, redness on the face or legs..We kind of all know what the flags are, but so easily forget. In fact this little list, not exhaustive, is also a reminder to myself.

I'd be super cautious. Sounds like a possible relapse. But hey, we are all different muddling along doing our best. I'd defo go and see your consultant.

Come to think of it, I was given a BP tablet course and had to come off after 3 or 4 days as I felt dizzy and itchy all over. Few years back. Even my sight was blurry.

Good luck.

And ask for the pneumonia jab from your GP.

[tisme2]

Well I had forgotten that I posted this some 4 Years ago, and after consulting my Doc last time I was told to up the dosage again. Well, after all this time I am back it seems like I'm back in the same situation again! Couple of months ago the Doc started to reduce my dosage down from 1000mg a day slowly down to 250mm morning and again in the evening. This last fortnight I've noticed that my eyes are dry and scratchy and my skin feels tingly like nerve issue or feeling cold and mild aches. My bloods have been monitored regular every 6/8 weeks and have been stable. But now that I'm only on the 500mg a day I believe I'm feeling the same way as before so I'm deciding to up my dosage to 500mg mornings and a 250mg evenings just to see if these symptoms subside, and if they do then I think it's going tobe MMF for the rest of my days! Oh well that will be better than a full relapse if it works.