Barry C
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They work mechanically different. Vyvgart didn’t work well for me so I’m instead going to try Soliris.
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The Covid vaccine (Pfizer) 100% caused my initial MG, so no way would I consider the boosters. One can argue that “I already had it, the vaccine was just the trigger”. Okay, but I’d counter argue that trigger may NEVER have been pulled in my life otherwise. My neurologist actually said that, so trigger vs cause is just semantics IMO. And I’ve had Covid 3 times since anyway. 🤷🏼♂️
I wasn’t an anti vax-er or crazy 😂, but I’ve now had several doctors tell me that the mRNA vaccine appears to be the cause (or trigger) for a wide spectrum of neurological and other health issues, including a significant spike in initial MG and exasperated MG of existing patients. Jabbee beware!
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I’m 53 yo male, will be having surgery this spring. Scan showed nothing “abnormal” with thymus but neurologist feels strongly that removal at my age should be standard, regardless if “normal”; she said “you have something there and we’re getting it out!”. 18-20 months since first symptoms (immediately after Covid vaccine). My symptoms are voice and swallowing, much better but still noticeable on standard meds and IVIG. Occasional, and significant breathing issues. Double vision went away on meds and hasn’t returned.
I can share my experience as it happens if anyone interested.
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For me, blurry vision that went from occasionally late in day to double vision within a month. Within that same month, completely lost ability to speak coherently. Dealt with that for another month, bouncing from vision and ENT docs, with zero real effort to figure it out by anyone in my medical “team”, including my primary. Then the breathing issues started and I ended up in an ER in Northern Michigan. I suggested MG and also the AChR Blocking/Binding blood test, which I’d found myself online. He actually listened, consulted with a neurologist at 3:00 AM, and ordered up the tests. Since the tests take a few weeks (at least in upper Michigan), he started me on prednisone which he said would be both therapeutic and diagnostic. Tests came back conclusive. Standards meds got everything under control for about a year, but speech issues have now returned. We’re tweaking meds, including Vyvgart soon, and also going to have thymus removed. I went to MG specialist and her team takes out thymus, healthy or not, as SOP for anyone under 60 or anyone really healthy over 60. She also ordered sleep study and said getting on a BIPAP machine was her #1 priority, even above the meds. Fingers crossed. I actually feel blessed, based on symptoms and my new phd from Google, this could have been much worse than MG.
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I’m not (or wasn’t) anti-vax, but my MG symptoms suspiciously first appeared within a few weeks of 2nd Pfizer dose. Could be coincidental, but I no longer stare side-eyed at those I know who are holding out on vaccine…I wouldn’t get it again. My symptoms started with blurred and then double vision, progressed within a month to paralyzed soft palate, making my speech incoherent. My primary doctor and ENT had no idea what was happening, they never even mentioned MG and treated me for dry eye and acid reflux, even as symptoms got worse. As my breathing became affected, I became increasingly curious about MG, and honestly was desperate for an answer that wasn’t ALS or MS, so I went to ER and asked about MG myself and getting AchR binding/bonding blood work. ER doc consulted with a neurologist and they agreed, and results came back very conclusively positive…still waiting for my neurologist to plant a flag on the diagnosis for some reason but she seems fairly convinced and started me on prednisone (30 MG a day, immediately resolved 90% of symptoms) and then pyridostigmine (180 MG a day). The pyridostigmine hasn’t seemed to incrementally help and has immediately caused crazy leg cramps and spasms. It seems a big part of this condition is dialing in the right meds, so I’m staying on everything and trusting my new neurologist for now. A search on cramps and spasms is how I’d stumbled upon this group, great info here!
Anyway, posting on this thread looking for others who’ve seen a connection between their MG onset and the vaccine. I have a few doctor friends who have told me they’ve seen neurological and autoimmune symptoms/conditions that started right after vaccine, but we’ll likely never know for sure.
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Hi Mary Ann – thanks for responding! Same for me on meds (and same meds), voice is getting worse, not better. The doc also doubled my cellcept, but that is the drug that I have least confidence in. Good luck!
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Hi June – thanks for responding! How long do your flare ups typically last? I think stress, mental and from physical exertion, are my main triggers. I’ve had the mental stress for several months and over did it physically the day before my voice started to go. This is my first flare up, 2 weeks before I can get into neurologist. Starting a new job and I sound like a cartoon character 🙂.
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Francis, 100% agree. An experiment intended to cause an extreme immune response did exactly that, with the unintended consequence of also triggering an auto-immune disease…all so you can still catch and transmit Covid. Ironically I have Covid right now…and MG after 2nd shot last June. Even bring it up to others and they look at you like you’re crazy and wearing a tinfoil hat, because the government narrative of “greater good” and “100 safe” has been so throughly believed. I wouldn’t take it again and I won’t be getting boosted.
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Everything you say is true, for 98%…it’s the 2% of us where this gets uncomfortable to discuss…I’m convinced the mRNA vaccine caused my MG. Or “triggered” if that makes it more comfortable, triggered something that may never have otherwise been triggered/activated.
There will never be any truths revealed about side effects, can you even imagine? The outrage and damage to future “just trust us” campaigns. That will be buried in the deepest holes in our government so all us sheep continue to do as we’re told.
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Theresa, how did IVIG work for you, I start in a few weeks and hoping it’s the key to getting off prednisone.
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Sorry to hear Joe. If it came out of nowhere, like me, I’m sure it shocking. I hope the meds get your symptoms under control – took a week or two for me and I think it will be months of getting them perfect. I find out next week if I have a thymus gland they can surgically remove…of all the strange things to hope for! Merry Christmas!
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Sorry to hear Mike. Your experience sounds eerily familiar to my own. The only positive was the 25 pounds I lost from anxiety, lol. I was relieved to get MG diagnosis, as odd as it may sound. My voice and swallowing are 95% better, and quickly so, after started prednisone. I hope you respond well to treatment!