Mycophenolate Mofetil 500mg
Last year was a milestone making 80, Octogenarian status, but challenge with multiple health concerns, full hysterectomy finding ovarian cancer, stage 3, chemo (now in remission thank God); urinary infection going into Sepsis, hospital pneumonia…and couple months ago Ocular MG. Drooping eyelids and Blurred Vision.
Went on 10 up 50 mg Prednisone for five weeks, the condition stopped, appear to be back to normal(?). Gradually coming off steroids 50 back down to 0 over 25 days. Neurologist wants me on Mycophenolate Mofetil, 500mg for what appears on the prescription.to be long term based 120 pills and five refills.
Anyone comment on this medication? Though the Oncologist feels my goal of going another 10 years to 90 is realistic, who knows with cancer, so quality of life is important. Has anyone or do you know of anyone who with Ocular who after steroids just went without meds? Understand that Mycophenolate weakens immune system, somewhat like chemo?
Thanks for any comments.
Hello, I just wanted to say that I have been on Mycophenolate Moefetil since April. I take two 250 mg. capsules, twice a day. I worried about the infection risks, but there have been no side effects. I read the manufacturer's insert on the bottle, it shows that a typical paediatric dose is more than I am taking. So the immunosuppressive effect is not severe at my reduced dose. My neurologist assured me that it should be no problem, so far he is right! Good luck with your treatment, Bob in SoCal
, thanks for your current experience with mycophenolate, that is encouraging. Are you taking Pyridostigmine too?
The family lived in Costa Mesa back in the 70’s, a lot of wonderful memories of days spent at the beach and the sunsets. May you continue to have good luck with your treatments too.Hello, Yes, my dose of Pyridostigmine varies between one to three of the 180 mg. Extended release tablets, depending upon symptom severity. In addition to the Mycophenolate, I also receive Vyvgart, four weeks on, six weeks off. I've not been able to use Prednisone, as I'm diabetic as well.
While the extended release Pyridostigmine has a much more "gentle and smooth" onset and action than the standard tablets, I also take a low (2mg.) dose of Loperamide to counter the GI effects. It all seems to work about as well as I could hope for, but I am always grateful that I have access to good care, and the ability to acquire it. I hope you're well, and continue so! Take care, Bob in Socal
Jodi: Thank you for your comments. Would you please elaborate on “adverse MG crisis or some adverse reaction”? The literature I have read on stopping steroids, going from 50 to 0 over a month appears to be acceptable, but naturally varies with each individual. I was on a similar level of steroids in treating Sepsis and Pneumonia and the withdrawal plan was over three weeks with no known problems.
As far as OMG, are you saying, the condition may come roaring back or some other adverse effect/crisis? The neurologist has treated OMG patients and been successful with everyone (His words), and gave me the downsizing schedule to do it in a month? I am hesitant to question him about changing it to 5 months without documentation.
Again, Jodi, thank you!
HelenI think I am in concert with your guidance. I have the entire time, during the ramp up to 50g and now in the downsizing, been taking Pyridostigmine 60mg, though the neurologist indicated that this may have little impact on the Ocular, it would help prevent the generalization. He has not indicated whether I will continue after the drawdown of Prednisone, but did provide for three refills on the prescription? He indicated that I would start the Mycophenolate, 500mg as I neared the end of the drawdown of the steroids. Will call him when I hit 30mg. This scenario after steroids appears to track with your comments.
The reason for my initial posting was my concern with taking Mycophenolate as I have had cancer drugs that were so intolerable, I told the Oncologist “no” not at this stage in my life. But others like you have said M’s challenges are pretty minimal? I have had no problem with the Pyridostigmine.
Again, Bless you for your conscientious concerns and comments.
Helen
I believe but am not sure that taking Mycophenolate with cancer drugs is safe. Your risk of infections will probably be very high, which could be challenging. I am unsure if the cancer drugs would be on this list, but this is an excellent comprehensive list of drugs that should be avoided or used if last resort with MG, http://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1.
- Jodi, Team Member
Hello! What an absolute blessing you are now in remission after fighting cancer! Our biggest congratulations go to you!!! It is so disappointing to hear you can't catch a break! 50mg to 0mg of Prednisone in less than a month has the potential to trigger an MG crisis or some adverse reaction. Typically I hear of those with MG decreasing by 10mg at most per month. I would maybe ask your doctor about this.
I am on Mycophenolate Mofetil, as many individuals have significant improvement and maintenance with it. 500mg is the size pill the medication typically comes as, but 500mg is a relatively small daily dose. I like the idea of starting small and possibly increasing because this treatment has common side effects. All are usually tolerable. It does increase the risk of infections.Here are some articles and discussions on our site regarding CellCept:
https://myasthenia-gravis.com/living/taking-cellcept, https://myasthenia-gravis.com/living/cellcept-basics, https://myasthenia-gravis.com/living/cellcept-experience,
https://myasthenia-gravis.com/forums/ive-bee-n-prescribed-cellcept
- Jodi, Team Member
