I've been taking mycophenilate for 3 months increasing my dose.. I feel horrendous migraine for days on end, pain all over my body, sick, not sleeping and totally washed out. I'm also really itchy.
How long does this take to pass or is this not suitable for me.
Hi Tias99. I was on Mychophenolate for years without any of those side effects. I would contact your consultant ASAP. Sounds like it's not suiting you and the itching maybe a sign your liver is affected.
Take care
Me too...had slight migraine at first but that settled within 2 weeks...5+ years on, myco has been great for me ever since...I agree with ludo: flag these adverse reactions up asap to your medics
Been on it for years..but
I saw a decent consultant of late,
he was a good man, honest and he speaks what he
thinks, rare quality!
This top consultant commented the risks associated with it
long-term.
He was referring to proneness to cancer as
we grow much older.
I think someone was brave enough to
just "say it".
"itching" sounds like some allergic reaction to me,
or nerves?
This is such an impressive experience. Who is this honest top doctor? I am in search of such quality in a doctor. Could you private message me please?
Unfortunately, he is not a "Rheumatologist".
Hi Autumnsonnet, how refreshing to have a consultant that is open, honest and upfront. I too appreciate that. Please could you let me know the name of the consultant.
Thank you and I wish you well.
Take care
Suzy
I've spoken to consultant and she wants me to continue I'm not keen
Hi Tias99.
Sorry to here about your poor reaction to mycophenolate. I was on mycophenolate mofetil for about 6 months but I experienced stomach side effects that worsened over time.
My rheumatologist prescribed, instead, the slow-release mycophenolate sodium and it's worked well, though I tend to get sick frequently with a sore throat and laryngitis. The systemic pain has decreased with the myco but the side effects still limit my ability to function normally.
I hope you improve and find the best suitable treatment.
Best wishes,
Michele
I was on it for a few years and didn't have much reaction but I didn't think it was much effective either. I was used to feeling unwell all the time one way or another. I had to discontinue (I think I convinced the doctor it was not doing the job) and moved onto something else. But 10 years down the road I was put on it once again (under a different doctor's care) and this time it made me very unwell. I kept up with it for about 6 months as I was assured that it was one of the better and safer long term immunosuppressant but I had to insist on quitting in the end. And within a week or so I started feeling better. If your body doesn't like it, you need to listen to your body. Clearly that is the best way to go. Your doctor doesn't live your body, you do.
Hope you find a medication that suits you well. Best of luck!
Thank you for all of your replies I'm now experiencing really sore very itchy eyes I've contacted my consultant again
It does sound like a possible allergic reaction doesn't it. Hope they take more interest this time.
Good Luck. Love to know the outcome.
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