Jerry Johnson
Forum Replies Created
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I believe the Covid vaccine was what actually gave me the MG. My neuro said no but next appt he said he was seeing a lot more cases of it. I had my first shot in late March and the second in April. Was diagnosed in end of May. Symptoms actually started in mid May.
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I am currently on Ultomiris and having very favorable results. If and when my body builds up an immunity to it, I would consider it. Right now a treatment every eight weeks is working for me. The risk of meningitis is possible but that is why they want you to get vaccinated before starting with it.
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I just started Ultomiris. The Vyvgart stopped working on me after about a year and a half. The Ultomiris seems to be working very well. While I was getting my first infusion of it, my wife said she could actually see the life coming back in me. When it was finished my eyelid no longer drooped. Next day I could chew an entire me without any trouble. Two weeks later still no symptoms. Now we wait eight weeks until next infusion. Waiting to see if it lasts. I’ll have to let you know on it.
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I have been on Vyvgart for a year and a half. I can honestly say that I have not had any adverse reactions to the treatment.
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Before goingì. On Vyvgart, my systems included not being able to chew well so I lost weight because I got tired of chewing and it took me so much longer to eat. But after the med took effect I gained it back.
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Hi everyone. I have been on Vyvgart for about a year and half. Very positive results. They actually started about two days after my first infusion. I highly recommend this medication. However, now my body has developed an immunity to it. My symptoms are not subsiding for as long as the doctor would like and my insurance is refusing to allow shorter time between treatments. Now my doctor is recommending Soliris infusions. We’ll have to see if the insurance will allow it.
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Mine is my jaw weakness. It responds but is short lived.
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Actually I have been on Vyvgart for over a year now and having great results from it. However I now have to go from every 50 days down to every 42 days from 1st trtmnt to 1st trtmnt. However I look forward to the next round to start because I know that I will be symptom free. Vyvgart is a miracle drug for me.
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Hi. I’ve been on Vyvgart for over a year and have never had a reaction to it. I am also taking mestinon without any incident. The treatments have been wonderful in dealing with the symptoms. It’s the in between times when the symptoms come back. Currently my down time is 50 days from first trtmnt to the next first trtmnt. But, it works wonders. I would advise you to go with it.
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I have been on Vyvgart for nearly a year now and have had no side effects from it. It has truly been a miracle drug for me.
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5 days having plasmapheresis. It only lasted about 2-3 weeks. I am now on Vyvgart and it is working wonders.
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Yes I did get my flu shot. However, I am not getting the COVID booster. I have read articles about the COVID vaccine causing MG. My symptoms started right after my second shot. The flu shot didn’t cause me any problems.
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Usually I would eat softer foods that I could crush against the roof of my mouth such as broiled or grilled fish, mashed potatoes etc. When I’m on my Vyvgart trtmnt cycles there is no problem with it. However, when a problem does arise such as eating steak or other tougher foods I too tend to use my hand to manipulate my jaw.
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I would do the same as you. The best foods were grilled or broiled fish, meatloaf, mashed potatoes or anything that would not be considered on the tough side.
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Vyvgart has done wonders for me. I noticed marked relief from all my symptoms two days after my very first trtmnt. I just went through my second series of trtmnts. My symptoms started to return after about 45 days. So my symptoms were not as severe prior to this round of Vyvgart. Also, no bad reactions from Vyvgart.
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My first sign was right eye drooping. I thought I just had a cold settled in there or possibly my allergies. I went to the ER after a couple of weeks passed. They admitted me to rule out a possible stroke.
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I just went through first round of Vyvgart. It worked great. No more symptoms. Lasted just over a month. Symptoms are starting to come back slowly. Will be starting second round in a couple weeks. Actually can’t wait. Works fast. Took two days to kick in after first trtmnt. Wonderful stuff.
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Sawyer, sorry you’re having issues. I was diagnosed a year ago and put on Mestinon. I take 120mg four times per day. It usually starts working about an hour after taking it. I also get severe stomach cramps if not taken after eating.
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My doctor tried to shorten the off time but my insurance overrode him. I guess they know me better than he does.