Mycophenolate

[mind1e]

Hi, just wondering if anyone else has problems with fluctuating sugars levels whilst taking this drug ? Lifestyle and diet have been ruled out for me, so it must be medication.

[OldTed60]

interesting question: I’ve never had sugar levels routinely tested while on MMF but have severe gastroparesis so many should? However when I attended Royal Free privately 3 months ago the professor suggested in his letter cc my rheumatologist - that some kind of tolerence levels be tested - not actually sure what - to check I’m not getting too much Mycophenolate. My rheumatologist said she’d look into this and lowered my dose from 3g to 2g.

My GP practice sent bloods in twice without me even realising - I thought just routine blood monitoring.

So my rheumatologist showed me these yesterday and said seems to be a discrepancy between them - first one fine second one high. She said it was higher when I was on the higher dose of 3g so I had it retested again yesterday. I was so nonplussed that I just nodded as didn’t know they were monitoring anything other than 3 monthly FBC and U&Es - which have been fine. Maybe it’s blood sugar they are monitoring - wish I’d asked her more now. I was going to post to ask if anyone else on Mycophenolate gets monitored for dosage tolerance

[mind1e in reply to OldTed60]

Thank you for your reply. I've been on mmf for 20 years with no problems, it seems to have happened since losing a lot of weight, due to lung cancer, luckily cured, phew !. I really don't want to take pre diabetic meds unless I really have to Gosh it's a real roller coaster ride getting the meds correct without causing another side effect.

[Bupsingh]

Hi iv been on it for about 3 months now but I’m a type 2 diabetic anyway and I’m on steroids as well my sugar has been up and down

[mind1e in reply to Bupsingh]

Thank you for replying. I've been on mmf for 20 years now with no problems, it's seems to be since losing a lot of weight. Gosh it's one thing after another with these unusual diseases. I do hope you get on OK with mmf, as its a good drug and that your diabetes settles for you.

[OldTed60 in reply to mind1e]

I was obese pre-diabetic just before starting MMF 3 years ago but turns out I had severe gastroparesis evolving and have lost 5.7 stone unintentionally in 3 and half years - now underweight. I did some more research and the tests Prof suggested were for Mycophenolate tolerance levels not blood sugar. I would guess your problem lies more with factors such as diet than to do with Mycophenolate but I could be wrong. Now my diet is mostly liquid and minimal sugar and last blood glucose was higher side of normal range.

[johncot]

Apart from periodic urine tests I've never been tested for sugar levels. I"m not aware of any problems and I've been taking mycophenolate for 4 years. Best wishes