anybody taking it ? Anybody with side effects ?
mycophenalate: anybody taking it ? Anybody with... - PMRGCAuk
mycophenalate
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Africschoice
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It isn't commonly used in PMR, much more so in lupus and inflammatory arthritis (I think) so you will get a lot more adverse effect info on those forums rather than here. That said, there have been a few here.
There was an article on mycophenalate where there was a trial on a small number of people with GCA which is quite interesting. ncbi.nlm.nih.gov/pmc/articl...
Having got down to 1mg per day for my 6 yr PMR I have been diagnosed with some form of vasculitis. Treatment Pred 60mg, 45mg, 30mg, 25mg, 20mg reducing and at the same time mycophenolate mefitel with absolutely no side effects. Next it is infusion with rituzimab ongoing 6 monthly. Hey ho.
Hi,
Sorry to hear that..what sort of vasculitis?
Hope all goes well…. 😊
Transmural necrotising. Dried blood from nose last November. After scan referred to ENT consultant with another cat scan and MRI. Confirmed not malignant. Referred to the Lupus& Arteritis clinic at Edinburgh Royal under the famous Prof Bean, not his real name. Thank you for your interest Dorset Lady. Hell, as a Chemist & Druggist with a bunch of pharmacies in Edinburgh for 40 yrs if I had a customer getting all these drugs I would be taking him out for dinner. Ho ho!
Good to hear non malignant- but still a worry and not pleasant I’m sure… and no doubt you rattle when you move [as hubby used to say].
All the best.
Sorry to hear that - is that what is also known as PAN (Polyarteritis nodosa)?
Just looked up the unit - and found this statement: "Our “standard” regime is illustrated below; this is always tailored to the individual patient."
But they seem very averse to steroids!
I have been on mycophenolate for seven years and recently just stopped because my rheumatologist was worried that it was affecting the production of haemoglobins in my bone marrow. I had huge problems tapering from high levels of prednisone for GCA first put on methotrexate which was not effective, then lefludomide and a month later mycophenolate and that was very effective.
hi there Africschoice.I have been on Mycophenalate for 6 months .The aim is to reduce my steroids.I am at the mining 7 mg of prednisone.My inflammatory markers were a little high at my last appointment so was unable to reduce steroids.To be honest the only side effects of Mycophenalate for me has been swelling in my legs a bubbling feeling and insomnia,but I have suffered with this for years .So that may not be the medication.
I have been taking it for over 10 years so far no side effects. I have monthly blood test. I was recently advised by GP not to take within 2 hours of lansoprazol as it will reduce effectiveness.
Yes I was taken offf lansaprozole too and to be honest I really did think that mycophenalate was the one for me.
Am I right in thinking you got excellent symptom relief on 15 - 20mg of prednisolone, two years ago, and have been tried on multiple steroid-sparing drugs since then? Unlike steroids, which act quickly, the steroid-sparing immunosuppressant drugs, such as mycophenolate mofetil, can take months to start working.
Agreed and I was in my 8th week when I went from 4 500mg tablets to one, they didn’t effect my stomach I really did think this is the one, however I started with a slight headache and a sore neck, kept taking the tablets paracetamol and gabapentin, movelat for my neck , and carried on. It got so I couldn’t move my neck, I had lumps like marbles all down one side of my neck and the pressure in my head was so bad that I could not rest it down on anything. Bearing in mind I suffer greatly from brain fog any assumption that I should know what I’m doing at all times is not happening, went to the doctors she said I wasn’t well ordered more bloods and a chest X-ray and said ring clinic. Rang clinic they took me off the meds straight away and here we are. Waiting !
