[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

[greynold]

liz,

Your MG history sounds similar to mine down to, I had a Thymectomy in 2021. I experienced Gastro-Paresis (GP) after being on Vyvgart Infusion for a year 2022-2023. I also have High BP and was taking a daily diuretic, named Hydrochlorothiazide (HCTz) I was speaking with another MG patient where I receive infusions and he indicated he had experienced the same thing, ultimately traced to the HCTz & MG. He was not on Vyvgart as at the time it was not approved for Sero-Negative MG. So I tried reducing HCTz dose to every other day and wonderfully my GP symptoms resolved. So, all I’m saying it that you might want to consider any other Rx drugs you’re taking and possible contribution to GP symptoms. Especially if there have been any recent change to your MG treatment. I had been on IVIG in the 2 years prior to Vyvgart Infusion and had no problems with GP like symptoms.

Good luck finding the source of the issue. GP symptoms are terrible as well as dealing with MG.

Greynold

[greynold]

This Reply is to original poster. Problem with Reply button on other msgs.

I’ve been on Vyvgart Hytrulo INJ for over 2 years, prior to that I was on the Infusion Vyvgart for nearly 2 years and initially on IVIG infusions for 2 years. My break time between Vyvgart H injection set (4 weeks, 1 inj./week) is only 1 week. Vyvgart Hytrulo was initially wonderful and eliminated all MG symptoms on this 1 week break schedule. I asked to see if a 2 week break period would work for me. I tried this for 2 cycles and realized that I could not have injections of any longer break duration than 1 week. MG Symptoms were so much worse during the 2nd break week than what I had experience prior to taking Vyvgart. Now, over a 2nd year with Vyvgart Hytrulo, I am finding that I’m experiencing minor MG Symptoms with Facial/Oral & overall Muscle weakness to the point that I have resumed taking Mestinon and occasionally 10 mg. Prednisone on particularly bad days during the Break Week and often until the 2nd Vyvgart Inj week.

So, for now I’m staying on the 1 week Break Week between injections and that seems to work best for me. Hope you fare well with your treatment.

greynold99

[greynold]

On recommendation of Neuro Doc and Pharmacist, I’ve had some success with daily dose of 25 mg CBD (from Hemp) caps and 300 mg Magnesium Chelate for anxiety and sleep issues. Had tried Rx Zoloft 15 mg last year with negative side effects of increased anxiety and racing heart… I did experience an unusual side effect with CBD that after 3 weeks continuous use – I experienced a ‘Sleep walk Fall’ in my bedroom. I did not hurt myself, other than a bruise and big knot on my right elbow; however, I’ve never Sleep walked before and I had no knowledge of getting up and walking that night… The fear of what could happen, caused me to go off the CBD for a few days, but the positive effect it had on me caused me to take on modified schedule of 2 days ON and 1 day OFF. So far that continues to work well for me. CBD seemed to act fairly quickly for me after only a few days dosing; similarly the negative effects returned very quickly once I discontinued.

Hope you find a good solution for you.

greynold99