[Keith]

I haven’t changed yet. My neurologist brought it up but I’m staying with Vyvgart for now. I’ve been able to use the 4 injections in a month and then 2 months off. I do get a bit tired toward the end of the 60 days but I complement this with one 60 mg Mestinon which seems to work. I’m a bit older than you (81) but I am able to play golf twice a week. The MG is being accompanied with spinal stenosis and bad hips. Isn’t aging fun.

[Mark Cox]

Thanks Keith, like you I’ve enjoyed Vyvgart, only wish it lasted a bit longer to get me through the infusion cycle.

Not only did my insurance deny shorter infusion cycles but my neurologist told me the FDA wouldn’t approve Vyvgart for less than 50 day cycles in concern to potential skin rashes…

Hopefully they’ll find a way to improve Vyvgarts strength for the full 50-60 day cycles.

Thanks for sharing

[CAPacheco]

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. 😕

[Mark Cox]

Excellent information, thanks for sharing…

[Debbie]

I started cellcept knowing Vyvgart was not lasting long enough. Unfortunately it takes 8-12 months to work. Anyone with issues start it now. We all know how quickly the years go. So the combo of cellcept and vyvgart have changed my life. I do the shots 4 weeks on and 4 off. And now I can manage. Without the cellcept Vyvgart stopped working. Ultimaris was a big mistake for me. I ended up in the hospital because it simply did nothing for my symptoms. I hope this helps

[miche]

Was it an allergy or bad timing, these drugs are not supposed to send us to hospital?

[greynold]

I was on Vyvgart infusion for nearly a year. It worked well for me but it only provided MG symptom relief for 14 days beyond the last infusion. I was able to get Vyvgart Hytrulo injections that take less than 20 minutes to administer. The only thing I would offer to you is that Ultomiris, along with other new treatments require blood lab tests and preventive vaccinations, some a little alarming, before and during treatment that made me re-consider going to another new treatment. I did stay with Vyvgart Hytrulo and have felt improvement with MG Symptom relief as I have had more than a year of treatment cycles. Having had negative side-effects from other prescription drugs most not related to my MG treatment, I’ve been reluctant to experiment with newer classes of MG drugs until my Neurologist feels comfortable prescribing them for me.

Good luck,

greynold99

[Mark Cox]

Thanks for sharing, It’s taken me close to a year to follow my neurologist recommendation of ULTOMIRIS just for the same reasons that you mention such as require blood lab tests and preventive vaccinations, some before and during treatment that caused most of my hesitation…. I wish I had heard of Vyvgart Hytrulo before changing to ULTOMIRIS to at least give it a try… Thanks again for sharing as I’ll keep the forum updated on my ULTOMIRIS journey in the months to come…

[staytuned]

Great feedback all !

I’ve heard that some MG patients have entered remission due to changes in diet / nutrition. Switching to whole foods (vegan?) helps combat MG better than a normal diet that incorporated processed foods. Can anyone share their experience ?

[cburton]

Hi, My name is Chris.

First time writing on this forum, just a brief history on myself. I was diagnosed last September, I was having difficulty breathing and being a heart patient I was quickly to blame my heart as the problem. After several test my heart was eliminated as the problem. A week later I took myself to the hospital and they to couldn’t find anything wrong and was releasing me to go home, I asked to be tested for MG and they said there was no way that I had MG. I told them that I had an aunt back

in 1970 was diagnosed with MG, they told her that she wouldn’t live past her 30’s. She passed in her early 60’s. My brother was diagnosed with MG at the age of 70 and Passed at 75. The hospital pulled me back in and ted me and I was positive for MG at the age of 73. I carry one gene for MG but not the two required. Anyway I was put on Vyvgart 4 weeks on 4 weeks off, on my fourth session and after the second infusion within hours I felt my body shutting down. I finished the last two infusions hoping it would boost my energy back ( didn’t work). I’m currently waiting for the IVIG infusion authorization from my insurance , hoping it will help. But as far as your question

I met a women who I became friends with switched from Vyvgart to Ultomiris a month ago and she said she feels as healthy as a horse.

Best of Luck to you and everyone else who has this dreaded disease.

Chris

[Jodi]

Hi Chris, thanks for sharing your story. It’s great to see you reaching out to connect with others on this journey. I’m sorry to hear about your struggles getting a proper diagnosis.

It’s encouraging to hear about your friend’s positive experience with Ultomiris. I hope your IVIG infusion gets approved soon and that it brings you some much-needed relief and energy.

Wishing you all the best as you navigate this.

-Jodi, Patient Advocate

[Mark Cox]

Chris, as first stated in my original post, I was put on IVIG first and it worked the best for me by far for six months but gave me severe migraine headaches that we could not control. Then I went to Vyvgart and it worked great 40 days of a 50 day cycle but it ran out in the last 10 days with MG symptoms starting to reoccur, mostly eyes, swallowing and stumbling around some times falling… I changed to ULTOMIRIS 9 months ago… That was quite a regiment just getting set up for it to prevent meningitis etc. and much more expensive than Vyvgart….

I have not had a good experience with ULTOMIRIS from the beginning. Please keep in mind my neurologist has several patients on it and really like it but most importantly our bodies are all different and do not always react the same. ULTOMIRIS lasted 60 days for me no problem as it was recommended for my work travel but the side effects for me were tough feeling like my mg got much worse especially in respiratory, wheezing now, body weakness mostly in the legs along with mood swings from rage to depression that I never experienced before and getting very little sleep feeling like a coffee buzz… But again, that’s just me and my body’s story just turning 65 years old having MG for 4 years now and still believe the second Covid shot triggered my mg as I began having all the full blown mg symptoms with 3-days later… but that’s only my theory for my self as it could just be coincidence but I do know there’s a lot more people with MG than there was four years ago before Covid..? I am going back to Vyvgart Hytrulo next week as it will make my work travel much easier to plan whereas I can pack it with me during travel.. I’ll keep the forum updated on my progress for anyone thinking of changing… I hope the IVIG works well for you and your body without the migraines or other and suggest drinking lots of of fluids and use a large flush of insulin to help keep the headaches down… Other than the side effects from IVIG, I honestly felt very normal for having full blown mg… Best of luck my friend…

[Ari]

I’m not sure that my post is in the right spot but I’ll put it in here. It is an informational bit about new drugs for MG, specifically those that are monoclonal antibody drugs. There’s no such thing as a free lunch.

I have many years of experience in developing monoclonal antibody based diagnostics and therapeutics. My experience goes back to the beginnings of the application of monoclonal antibodies. I’ll use the abbreviation MA

MA based drugs have their place in medicine but they are not the magic bullet that their purveyors would like you to believe. No two people have the same genetic makeup. Therefore when a company puts out an MA drug it’s constructed to target a group of individuals who have the closest gene makeup that their MA product will target with therapeutic benefits with the smallest number of people who will have an adverse reaction to the product. By its nature an MA drug is going to create some unpleasant side effects, as benign as diarrhea on up the scale to potentially lethal effects.

So, if you’re considering taking an MA drug, don’t let the the provider of the drug to “shine you on”. Make them disclose to you the complete list of contraindications of their MA drug and, based on an evaluation of your genome, how likely is it that the list of benefits to you will outweigh the negative impact that you can expect from taking a given MA drug. And I must tell you that this process doesn’t have a very high accuracy of creating a specific list for specific patients that will give you an accurate estimate of the beneficial aspects of the drug as opposed to the contraindications. This is true of all drugs, but when you are putting out a drug that works all the way down to the level of the patient’s genome, well, “There’s no such thing as a free lunch”.