Sponsored: Living with Generalized MG? Get resources a free PopSocket here.
Have you ever stopped a medication or treatment because of side effects? If so, did you switch to a different medication or treatment? How did you approach the conversation with your healthcare provider?
I had to stop CellCept because I kept testing positive for Hepatitus. I believe the Hepatitus, which I never tested positive for in my life, was caused by the IVig treatments. The doctors insist the Hepatitis was not caused by the plasma I was receiving once a month. Anyway, I was originally prescribed 40 milligrams of steroids but i just could not handle that in my stomach so I chose to take only 30 miligrams. After a year and 3 months of steroids, I stopped taking steroids when I had reached 5 milligrams. My liver and kidneys needed a break. I have developed pre-diabetes. No meds prescribed, just diet and exercise. I have also been waking up now with stiffness in my knees and shoulders. I am taking calcium pills among other vitamins to help my bones.
Yes. For me both pyridostigmine (Mestinon) and azathioprine (Imuran) worked marginally at first, then eventually the negative side effects became worse than the positive effects. For now, I am just continuing with prednisone, but upon recommendation of my neurology professionals, I'm keeping them both as potential "rescue" drugs. So far, no other drugs have been offered as better or even possible options. I should note, however, that the neuromuscular specialist that I see has declared me to be a "high-functioning" MG patient.
I have been fortunate that all of the medical people I see regularly as needed listen to me, so it was not difficult for me to indicate I believed the side effects were not worth the little if any positive effects I was experiencing.
I'm curious at to what brought you to pose your questions. Have you had some less positive experiences?
In case you have not already seen this, here is a link to more info about azathioprine. https://myasthenia-gravis.com/living/azathioprine
Thank you for the link. Yes, I've been doing my research on the medication as well. With how complicated this disease and the many different routes we can go for our personalized care plan. It's good to be educated and or somewhat knowledgeable on what we're putting into our bodies. - Jazmin (Mg team member)