CAPacheco
Forum Replies Created
-
I ran into the same issue. Unfortunately I take 4 of the 180mg ER tabs daily and they had to substitute a 3 month supply of 60mg tabs instead. So that is 3 tabs each dose … 12 per day. Not fun, especially because I often have trouble with swallowing due to my MG. But I have to be on it. I tried the liquid Pyridostigmine but my insurance company would not approve it for more than 1 month. Besides, it was unpleasant tasting. But we carry on.
😉
-
I received two rounds of once a week, for four weeks Vyvgart IV infusions, not Vyvgart Hytrulo injections. The first round gave me almost three months of relief and I enjoyed a “real life” but the second round effects didn’t last for more than a few weeks. I am now scheduled to begin Ultomiris infusions, which my new neurologist swears by. We shall see. I did receive the meningitis vaccines to prepare for Ultomiris last year but then went forward with Vyvgart. I had considerable back pain after each Vyvgart infusion as well as severe migraine-like headaches for days following each infusion.
-
I have experienced considerable back pain and weakness in low back and above my waistline since undergoing treatment with Vyvgart. First round began in August; second round was in December. I am scheduled to see a pain management doctor because per my neurologist, it cannot be related to the Vyvgart, although per info I have read, it was a side effect during clinical trials.
-
Actually, I am currently taking 3 of the 60 mgs tabs each dose (I take 4 doses daily) because the pharmacy didn’t have the 180 mg ER tabs. I’ve been on them for a few weeks now and all has been fine. Now you have me concerned. I’ll ask my neuro.