change of meds: hi, all I have a question... - Vasculitis UK

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change of meds

tomo1854 profile image
13 Replies

hi, all I have a question because of my recent gpa flare my consultant decided to change me from azathioprine to myfenax(mycophenolate mofetil) I asked him why he said they were not working has anybody had any bad side effects from the new med he has prescribed I was ok on the azathioprine?

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tomo1854
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13 Replies
May7 profile image
May7

I have discovered that we all react differently to the disease and to medications. I found that I was allergic to azathioprine, and they put me onto mycophenolate, which I have been happy with for the last seven years. Others have found the opposite. You can but try myco, see how you go, and report any problems to your team.

tomo1854 profile image
tomo1854 in reply toMay7

thankyou may will see how i get on take care

artists profile image
artists

l had severe diarrhoea with mycophenolate.

I continued with them in different strengths for about 8 months finally having to come of them . It was very much the cure worse then the illness .

tomo1854 profile image
tomo1854 in reply toartists

thanks for your reply I hope my cast iron guts can cope on top of all the other meds I take take care

vivdunstan profile image
vivdunstanVolunteer

I've been on both these meds, including simultaneously, as well as many others. Up to 5 immunosuppression drugs simultaneously. I was on a bonkers cocktail!

Everyone reacts differently to medicines. But generally it seems that Mycophenolate Mofetil causes fewer troublesome side effects for most people, and is generally well tolerated. It can be a very effective maintenance drug.

As for me it did give me tummy problems and nausea, but I got those from all the drugs I was on. I ended up on permanent anti diarrhoea pills and anti nausea pills so I could keep on the Myco. And it's worked really well to control my still too rumbling disease. After I finally demanded the long-postponed Cyclophosphamide infusions (18 years into my disease!) things stabilised more for me, and I was able to reduce my cocktail to just 7mg steroids and 2g Myco. I expect to be on Myco for life. Still with my side effect helping drugs, but happy!

Azathioprine caused me much more distressing side effects, so it's fortunate you didn't have those.

I hope you will do well on the new treatment!

tomo1854 profile image
tomo1854 in reply tovivdunstan

thankyou so much for your advice i will give them a try take care

PMRpro profile image
PMRpro

Deletion is no problem - you'll need to take the other stuff out now it doesn't make sense!!!

Investigator1 profile image
Investigator1

Hi tomo1854, I couldn’t get on with Azathioprine, I was ok for a couple of weeks but then Vomiting and the squirts came upon me every day for about 6 weeks than eventually they took me off it, not because it was not suiting me it was because my GPA was coming back. It clearly wasn’t working. Now on Rituximab. Take care and stay safe. Nick.

tomo1854 profile image
tomo1854 in reply toInvestigator1

thanks nick we are all different as people say i will see how i get on with them take care

SmileySunshine profile image
SmileySunshine

I had a flare last year (after over 20 years of remission and no meds!) I was put on Methotrexate and my liver wasn’t happy, even though years ago it was fine, so I was switched to Mycophenolate and it’s working fine with Prednisone. Reducing pred now and will stay on Mycophenolate for now. No side effects for me, thank goodness. Good luck to you.

tomo1854 profile image
tomo1854

hi smiley glad to hear you are well i hope they work for me to take care

Roughley17 profile image
Roughley17

Hi, I had awful side effects to Azathioprine so was changed to Mycophenolate which are apparently tolerated better by most people. I've been fine on the Mycophenolate. Hope it's the same for you.

tomo1854 profile image
tomo1854

thankyou i will keep my fingers crossed take care

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