Cellcept side effects
Hello,
I’m in the UK and over here Cellcept is called Mycofenax.
I ve just been put on this drug as I had to come off off Azothioprine as it was affecting my Liver.
Has anyone had Neuropathy ( numbness in hands and feet) since being on Cellcept? Also my eyesight has deteriorated with aching and blurry vision. I’m unable to watch TV or read a book now as double vision seems to be returning, this was the first symptom I had at the beginning of last year, culminating in a seven week stay in hospital and intensive care ((Myasthenic crisis).
I would be grateful for any feedback as I am not sure that I want to stay on this drug if it is going to make things worse, particularly the neuropathy as I’m given to understand that this can become permanent!
Many thanks to you all,
Tillyval
Hi there I am in sleaford in the UK. Sorry to hear about problems with mestinon and mycophenolate. I had a thymectomy and have been in remission now for nearly five years.i still take mestinon at 60 mg four times a day and mycophenolate at 750mg twice a day and am pleased to say I have had no side affects at all. I used to be on steroids but weaned myself off them because ofvthe horrible side affects namely swollen limbs
I have been on cellcept a few months, vyvgart a few months, and was on prednisone which drove me crazy. GP said my numbers were good at last appointment, he can't put me on any statins because of the cellcept. I thought that was a plus, so he did not make another appointment. If this stuff ruins your liver maybe I won't have to live 20 years with this mg.
Thank you for your very informative reply.
I have been on prednisone and Mestonin for over a year. The Dr is trying to wean me off of the steroids and that is why we are trying Mycophenolate as the Azathioprine was damaging my liver.
I had prisms at the beginning and an eye patch, after the Crisis the double vision went away and my sight has been good until just recently but now it has deteriorated again, I am assuming this is because of the reduction in steroids and this new medication.
Several of the sites I accessed say that peripheral neuropathy particularly if associated with Diabetes is not curable. Of course I now also have steroid induced diabetes to cope with, but my sugar levels are being monitored and my feeling is that it is the Mycophenolate that is causing the neuropathy. I will tell my Neurologist that I want to come off of this as I don’t want the neuropathy to get any worse or indeed become permanent.
So glad that I found the Myasthenia-Gravis web site, there is very little information here in the UK and as far as I can find there is only one charity called Myaware, which although helpful does not have a forum like your site.
So many thanks for being there😊
TillyvalI encourage you to join the Myaware Facebook group if you have yet to: https://www.facebook.com/groups/myawarenationalpeersupport. It says it is a national group, but it has 877 members, which is good because it's not too small or too big. I see people have been active on it even today. Because it is Myaware, it may have a decent number of UK individuals.
-Jodi, Team Member
As you can see here, https://www.mayoclinic.org/drugs-supplements/mycophenolate-mofetil-oral-route/side-effects/drg-20073191, mycophenolate has a very lengthy list of common side effects, with "numbness or tingling in the hands, feet, or lips" being on that more common list. I would love to hear what resource you have for the information that this could be permanent. I'm always looking to expand my MG knowledge to help others as best I can.
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How long have you been on CellCept? Some side effects, like gastrointestinal upset, often subside after a few weeks. However, I'm not well-versed in the neuropathy aspect, as I haven't come across much feedback on this. Remember, your health is ultimately in your hands, not just your doctor's. If you're uncomfortable with a treatment, don't hesitate to voice your concerns and explore other options with your doctor. There's a wide range of MG treatments available.
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Have you considered alternating eye patches to strengthen your eyes? Some people have found this technique helpful. Additionally, prisms can be a game-changer for people with MG ocular symptoms. You can find more information on this at https://myasthenia-gravis.com/clinical/prism-glasses.
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The CellCept and other immunosuppressant treatments can take months to take effect, so in the meantime, I recommend discussing mestinon (pyridostigmine) and prednisone with your doctor if you are not on those as they are faster acting. IVIG and PLEX are also common to help with uncontrolled, such as eyesight symptoms you're experiencing, while immunosuppressants are still building up within the body to be able to take effect. https://myasthenia-gravis.com/crisis-treatment
-Jodi, Team Member
