Mycophenolate : Has anyone taken mycophenolate... - Vasculitis UK

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Mycophenolate

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Has anyone taken mycophenolate mofetil with rituximab. My In fusion of rituximab lasts approximately 4/5 months so it’s been decided that mycophenolate should be added ? It just seems to be so many drugs l worry.

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DaveCop profile image
DaveCop

I stop taking Mycophenolate two weeks before my infusions and restart two weeks after, I had no issues until I had my second Astra Zeneca vaccination. Within a week of the vaccination I started to flare, after taking two years of tapering off prednisone I have had to increase it, I have sores on my legs and I’m in constant pain with my joints. Keep on fighting it though!!!

Main1234 profile image
Main1234

Hi my OH is on a 2 year course of RTX after a relapse of GPA last year. He is also receiving MMF and has just to started to reduce his prednisone now in 4 mgs. He has had no side effects from this regime.

The number of drugs can be a worry but uncontrolled disease is worse.

Have you a consultant who is experienced in vasculitis?

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jaydub

I've done that and became way too immunosuppressed which resulted in a string of minor infections such as impetigo (very nasty). Be careful you actually need that much immunosuppression. I'm not fond of prednisolone but have found it to be a more controlled way of bridging between retuximab infusions.

2534 profile image
2534

I had mycophenolate for a year at quite a high dose but my next nerve conduction study showed a decline so it did nothing for me. I was moved onto RTX and that has helped. I asked the consultant I had a teleconsultation with (at Addenbrooke’s but not Prof Jayne) and asked if they had anything in the toolbox if the RTX became less effective. She said yes but didn’t go into details. Might be worth asking. I’m with you in not having having too many drugs if at all possible. Good luck.

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artists in reply to 2534

Thank-you every one for your relies . I am going to take steroids for six weeks before RTX infusion and then the introduction of the mycophenolate. A couple of days ago I was concerned about the amount of drugs l would be taking . Today however I am happy to take all and every drug l can get hold of . After an awful few days l feel differently. l must be a nightmare to treat but l can only improve . Thank you all .

elves profile image
elves

My husband takes it and his feet started to swell up and he complains from joints problems. He has cerebral vasculitis therefore must carry on. May be check with your doctor. Hubby was sent to carry out blood work. They said that will monitor.

kitkatmum profile image
kitkatmum

Hi, I only have experience of Rituximab with azathioprine, antibiotics and steroids , if that is of any help?

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artists in reply to kitkatmum

It all helps. Did you have steroids the same time as rituximab ? Thank you

kitkatmum profile image
kitkatmum

Yes, started off with IV steroids then tablets, 60mg daily. That was November 2019. Had first Rituximab December 2019.I have Rituximab every 6months, due 4th one next week. I’m now tapered down to 1mg steroids after a slow tapered reduction while still taking 100mg azathioprine daily. I’m still on high level vitamin D too. 😊

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artists in reply to kitkatmum

Thank you. l didn’t realise that both could be given together .

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