CAPacheco
Forum Replies Created
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I was on a statin for my cholesterol for a number of years before I was diagnosed with MG. It was over a year before I knew I wasn’t supposed to be on it – following my MG diagnosis. That and a couple of other medications I was on were “no-nos” but the neuro I had at the time failed to inform me about a number of matters associated with MG. Needless to say, he’s no longer my neuro. 🙃
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Trouble swallowing and chewing, feeling out of breath, blurred vision and fatigue (overall body weakness/pain). The fatigue is daily, the others occur less frequently. None of them have gone away completely with any medication received.
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I was on 4 – 5 180 mg. Pyridostigmine ER tabs until about 6 months ago. Started on Ultomiris and began taking less Pyridostigmine (1/2 tabs). I’m currently on four 60 mg. tabs daily. ☺
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After experiencing an MG crisis (hospitalized and treated with Plasmapheresis), I had IVIG for 2 months, then I was infused with Vyvgart. Had 2 rounds (4 weekly infusions) in 2023. The first went very well and I started feeling much better, strength and stamina restored, no more double vision or wonky eyes. About 2-1/2 weeks before the second round was scheduled symptoms returned. Less than 3 weeks after round 2, I experienced all my symptoms returning. My new neurologist recommended Ultomiris, which I started in April 2024. I did very well with improved strength, etc. but after my last session I noticed it’s not “lasting” so I am scheduled to get an increase in the dosage. Hopefully that will help. Long story short — I did much better with Ultomiris than Vyvgart. I’ve remained on daily Pyridostigmine throughout but with Ultomiris, I have been able to reduce the dosage. Small miracles. Only real issues I’ve had after Ultomiris infusions are severe headaches for about 2 days and breakouts – pimples, just like a teen again. 😕
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No. I asked my new neurologist’s office WHY he did not repeat blood testing following my treatment with Ultomiris. I was curious if testing would show improvement. I was told it’s not done. He had my initial blood work and that was all he needs.
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I had 2 IVIG infusions last year and they didn’t do anything, so my doctor recommended Vyvgart. The first round (1 infusion a week for 4 weeks) made me feel GREAT but the second round of infusions didn’t last. The first round I had in September, and was to undergo second round in late December. But by early December I was winding down, getting weaker and weaker with MG symptoms. Second round ended the second week of January and about 2 weeks after, effects wore off. Was on Pyridostigmine following both infusions. I’ve been on Ultomiris since April and receive 1 infusion every 8 weeks. I have been doing a lot better on the Ultomiris. I just hope it continues.
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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.
😉
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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.
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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.
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I understand that Pyridostimine is the GENERIC form of Mestinon.
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Thanks! (Sorry for the late response 😆 )
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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.