mycophenolate

[Melaxx]

hi everyone 😊

Does anyone on here with lupus takes Mycophenolate, I just started but when I read the side effects I’m not really sure .

thank you 🙏

[ShannonB]

Hi! I have taken it for about eight years — it was my miracle drug for the first five. I had no issues whatsoever and it helped me with debilitating fatigue and joint pain. In recent years it’s started being less helpful and I’m tapering down at the moment while I taper up methotrexate— personally I’m having a much harder time with mtx. Good luck! Definitely worth a try, I was nervous too but it helped me so much.

[WinterSwimmer]

The best lupus drug I have taken. For me it works - and as long as I take it on an empty stomach, as directed - no side effects. Started taking it in 2012, 2g/day. Stopped in 2017 but symptoms returned. Now I will probably take it forever!

[Barbs52]

I’ve been on Mycophenolate for 5 years I have Sjögren’s with lung disease and it is a life saver for me. Best of luck 🌻

[rachelsca]

I also take Mycophenolate, I've been taking it for nearly a year now. I have responded really well to the treatment and it has helped with my kidneys, swelling and all around icky feeling. It (like all drugs) can have some side effects that may be too harsh for you but managing the dose can help. 3g per day was too much for me but 2g seems to work well. Hope that helps.

[Tanitani]

don't read into it too much. Even aspirin has a long list of side effects bit they are all rare. Compared to other lupus medication , MMF is not one to worry about. Im on it for 15 years.

[Radha2krishna]

hi my daughter 11 year old she is taking 1250 mg per day for lupus from past 1 year she is doing good, I dont want to stop the medicine because I dont want to take any risk

[Simply_Kea]

Hi Melaxx,

I have been on Mycophenolate for a number of years & felt there wasn’t many side affects they deffo help with fatigue & the joint pain.

However I recently saw my consultant face to face again since covid & explained I have been suffering with IBS like symptoms & always feeling the need to be sick & he suggested that this was related to the Mycophenolate & switched it to a gastro resistant form of Mycophenolate.

Hope that helps

[cowhide]

I have taken mycophenolate for 6 years with no problems at all. I take 3 gms/day (for scleroderma) which is a dose that is widely prescribed. Your dose should be introduced gradually and you should have regular bloods to ensure that white cells do not drop too low. My bloods are now 12 weekly. The only possible complication I have is that due to white cells I get slightly more minor infections requiring antibiotics (eg infected finger through a small cut) but I do work in a very dirty environment.

[Poshcards]

can anybody here tell me how to post a question please?

[tiredmum]

I have taken MMF for about 10 years, I got nausea and diarrhoea on 3000mg but can tolerate 2500mg absolutely fine. I weaned myself off of it because of Covid but the joint and muscle pain and chest pain has become too much for me again keeping me awake of a night time. It’s well worth taking.

[WaakyeGob3]

I have taken it for a couple of years now. It’s quite good and I did not have any side effects with it. Its been very helpful for the kidneys but not too helpful for my joints. Additional medication is needed for my joints. But with regards to the kidneys, it’s the best medication you can ever be put on.