Switching from mycophenolate or azathioprine

[FEEL-THE-BLUE]

Hi All,

Last year November I was diagnosed with Lupus and my Rheumatologist doctor is really good and he took care of my lupus symptoms very good and now last week he gave me good news that my Lupus is well controlled after checking all the blood reports but I had one major issue that my hand were shaking alot and my doctor thinks it's due to mycophenolate so he stopped mycophenolate for 2 weeks and my condition with hand shaking is far better so he suggested azathioprine.

If anybody tried the same switching from mycophenolate or azathioprine I would really appreciate that.

Thanks

[Sandy1212]

Hi there! yes i switched from MMF to azathioprine over a year ago now. MMF caused me to have awful muscle cramps. Whether or not it worked for me is debatable as I was only on it for two months and on high steroids at the time. For me unfortunately the azathioprine is not enough to control my lupus but they are going to keep me on it and add another immunosuppressant for me. Having said that, I have pretty much no issues with the azathioprine apart from the occasional nausea but that is rare. I know some people have said that it has really helped them so hopefully that would be you! Personally i would prefer azathioprine as it one of the rare immunosuppressants that it’s safe to get pregnant on and apparently a good one if you have kidney issues(i dont have any but still a plus). If MMF is causing hand shaking it’s definitely worth considering a change!

[Hetty56]

I was diagnosed about 14 years ago. I started on high dose prednisolone and then to azathioprine then to hydroxychloroquine which was regarded as a safer option. After 9 years on that I suffered macular toxicity which was caused by hydroxychloroquine. I’m now back on azathioprine, the lupus is well controlled and I’ve never had side effects. The only downside is the 3 monthly blood tests as apparently it can affect the liver but, again, all clear so far

[Tinkabell555]

You have a similar journey to me, diagnosed with SLE in November and have been on several medications that have been added to - varying does of prednisolone, hydroxychloroquine, followed by starting azathioprione in March time. It took me 5 times of stopping and starting it to get it into my system and tolerable and now I’m fine on it. I don’t know if it coincides with an infection or the medication itself caused several symptoms including chest pain shortness of breathe and high temperature - it also could have been covid who knows. Anyway I stopped it, started again a week later n symptoms of breathlessness n chest pain came back, stopped again within 24hrs, tried again a week or so later after more

Antibiotics etc. Went on like this for about 6 weeks, 5 cycles of stop starting. I persevered because I wanted to become pregnant and this was the safest to help with the lupus kidney involvement. And it worked lupus is under control, no side effects of meds and I’m pregnant so give it a go if u can and persevere hopefully it will work for you. You also have weekly blood tests at first gradually reducing in frequency. Good luck!

[saltrock]

Mycophenolate wasnt working for me, symptons returned as I reduced steriods. Switched to Azathioprine and was so relieved as helped symptoms SO much. Problem for me is my ALP results went up, rheumy reduced the dose to half and is hoping to gradually increase, I'm hoping it works. I suffered no other side effects with it.