Mycophenolate and what to expect

[Welsh92]

I’ve just been put on Mycophenolate

500mg once daily - increasing to 1000mg twice a day over a 4 week period. Bloods booked for every two weeks for the next 6 weeks.

I’m on colchicine, triple mouthwash and prednisone- weaned down to 10mg but flaring up, so back up to 15 and 20 if needed daily.

What should I expect with Mycophenolate? And Is it a routinely given one? I was expecting Aza but this was the only option.

[CecilyParsley]

I am so pleased that it has finally been sorted for you. I sincerely hope it helps. I think many DMARDS have similar side effects with some affected more than others. I am still waiting for the green light to start Azapriothine . Good luck xx

[Welsh92 in reply to CecilyParsley]

Thank you lovely! I’m very nervous. Ahhh no way, hopefully you can start it soon!! Xx

[Sherlock11]

I was on mycophenolate after azathioprine as I developed GCA whilst on aza, and my wcc kept dropping. I had less infections on mycophenolate but unfortunately wasn't enough to control my Behcet's.

[Welsh92 in reply to Sherlock11]

Thank you for your response, how did you know it wasn’t working for you? Did you still get a lot of symptoms? X

[Sherlock11 in reply to Welsh92]

I was on mycophenolate when I first went to Aintree CoE. At the time I wasn't yet diagnosed with Behcet's but I was getting lots of oral and genital ulcers and rashes so Prof said it wasn't controlling it. I was then put on Rituximab ,then came Covid so I was swapped to Stelara and am still on it.

[swanseakev]

Was on Mychlophenelate and Ustekimumab when I had a break off the MTX and Infliximab infusions, didn't do much for me .Had a reaction during my first infusion of Ustekimumab and never improved after that so Rhuematologist and Gastro team put me back on Preds, Mtx, Infliximab .

[Welsh92]

thank you all, I’ve developed pain since starting under my right rib cage. Spoken to a nurse today and was told to stop for two weeks, see if it calms down but I don’t know what on earth I’m meant to do in the mean time. My mouth is starting to ulcerate and I’ve just about had enough of this