Transition from Cyclophosphamide to Mycophen... - Vasculitis UK

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Transition from Cyclophosphamide to Mycophenolate

6 Replies

Hello,

I am due to complete my 10th and final cycle of cyclophosphamide in a few weeks. My rheumatologist proposes to then start me on mycophenolate. I am wondering how this transition may affect me. Assuming it takes several weeks to build up in my system am I at risk of my GPA flaring?

Any experiences you may be able to share would be appreciated.

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6 Replies
Rachelle_Labelle profile image
Rachelle_Labelle

I took cyclophosphamide on two occasions. Though I read a lot of scary things about it being toxic and carcinogenic, I don't seem worse for wear.

In 2007, for several weeks to fight microscopic polyangiitis.

Throughout 2014-2015 to fight AL Amyloidosis.

I don't remember any serious side effects.

Buckfast profile image
Buckfast

I have been taking 2g of mychphenolate daily for the last 18 months after cyclophosphamide and have had no real problems with the drug. This at present running along side a great number of other drugs and prednisolone. Also at present receiving rituximab at 5 month intervals. Blood monitored every month but 2 weekly initially. Just back from Addenbrooks today and all appears ok. (Fingers crossed).

Jessileigh profile image
Jessileigh

I had taken C, and it made me so terribly sick.

I stopped and now months later, another flare, this time we will try mycophenelate. I have been taking 2mg a day for 2 weeks, and tomorrow starting 4mg a day. I am told separately by nephrology, general physician, and rheumatology that it is safer and gentler. Expect spending some time figuring out what to eat, what tastes right and sits well in the tummy. Otherwise I think this is the drug. So glad I didn't have to go to remuxitab infusions. Anyway, maybe see if you can start slow and titrate up. I dont know how you will prevent a flare. Cross fingers and toes for you!

in reply toJessileigh

Thanks. Sounds hopeful as I've not been too bad with cyclophosphamide. I'll cross a few digits too.

ludo profile image
ludo

Hi, I was on mychophenolate for GPA for several years. It brought me into remission with no real side effects. It was stopped a year ago and so far so good.

Hope it works well for you too.

Best wishes

Chris-Bromsgrove profile image
Chris-Bromsgrove

Hi, I also take Mycophenolate as a maintenance drug for my MPA. However Initially started on Azathioprine following the Cyclo. This tends to be the preferred maintenance drug for ANCA associated vasculitis at least. Unfortunately I had some side effects and was taken off it after four weeks then started the Mycophenolate. I do remember being a bit concerned I was going to flare during this transition period but my consultant didn't seem to be too concerned. That was nearly six years ago and thankfully there have been no flares in that time. Hope all goes well with your transition to Mycophenolate. Chris

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