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Just Started Ultomiris today
I just had my 1st Ultomiris infusion today, exactly 2 months after stopping Vyvgart Hytrulo. Almost 2yeas ago I let a cardiologist talk me into taking rosuastatin for cholesterol. After 29 pills I realized that my MG symptoms were getting worse. I kept hoping that the relapse would end, but finally decided that my love affair with Vyvgart was over. My Neurologist and I decided to try Ultomiris since it works in a different way from Vyvgart. I decided to stop Vyvgart on
Dec. 19 to clear my system of the drug while getting the 1st 2 menengitis vaccines. Today was 2 weeks after my 2nd series of vaccines. My MG is back to untreated and I did find out that Vyvgart was actually doing me quite a bit of good. Now I am on Ultomiris and waiting for it to start helping.
I would like to hear from people who ate using or used Ultomiris.
Thanks, Dale.
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4 Replies
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Have you had a EKG? There is a good reason why. Some people with Myasthenia Gravis have a suppose my cardio infraction that appears past the midpoint of the EKG, this is due to muscle strength! The heart is a muscle as well. Beta blockers can help with the blood flow, which is compromise due to the muscle strength of the heart and the lungs.
The understanding of a home respirator is due to muscle strength. My bunch wanted me to die so much they gave mine away cause they hate it even my Doctor Who was a heart and lung space.. I was kicked out of my own home because I had healthcare issues. And the fact of something to pertaining to my doctor!
A lot of people with the BiPAP for my Don’t understand if you invade the lines with too much pressure to begin with, They become compromised way too quickly! It’s best to introduce at a lower pressure than most biopsies are set at. The best Senior affects your muscular junction meaning the diaphragm and the chest muscles can’t constrict strong enough. The thing is should it be called a BiPAP or should there be a like a third respiratory support? You could use a BiPAP the thing is it’s way too much way too quickly! The biceps seem to reduce the work of the breathing! They’re actually needs to be like a third machine, not a CPAP or BiPAP, which both are important among support, but there has there really needs to be like a third Machine!
So could it be like a third sitting? A lot of people have too much pressure to quickly what happens is the body becomes needy so to back out the pressure and it started a level that the carbon dioxide levels are push From the body!
Tonya Moss in Kennesaw Georgia!
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Tonya, thanks for your reply. The bipap machine I use is primarily a sleep apnea device and not a more complicated respirator like very advanced units. In 2008 my sleep test showed an AHI of over 140 apnea or hypopnea events an hour. Using my device I have reduced my events to 1 or less per hour. The pressures I use are quite low with EPAP of 8cm H2O and an IPAP increase 4 cm H2O. It is auto adjusting up to EPAP of 21 cm H2O and max IPAP of 25cm. Unless I use a nasal mask and experience mouth leakage it rarely rises more than 2 or 3cm. These low pressures do not cause central apnea events for me.
I have had many EKGs since 2020. In early February I undiagnosed Covid 19. Luckily for me and my wife Covid 19 hadn’t entered mainstream consciousness. We just knew that we were experiencing the absolute worst flu ever and did not seek treatment. We weren’t subjected to intubation on a ventilator and killed like so many were after the pandemic became known. My bipap did help me considerably. In October 2020 I had a pulmonary embolism that I blame Covid for. I developed atrial fibrillation which I didn’t realize until I bought a Smart watch which informed me I had a problem. Things progressed until I had bradycardia. My heart rate of 30 made thinking impossible and I spent a couple of years circling the drain until my WONDERFUL angel of a nurse at my infusion center literally forced me to seek a pacemaker. One week later I had my brain back and felt the best I ever had since my 1st bout of Covid.
Starting out at the ER seeking the pacemaker I have had many EKGs since then. On October 13, 2025 I started taking Zepbound as a treatment for sleep apnea and I have lost 75lbs to date. Since I started taking it at 420lbs, I felt that loss of muscle was an acceptable risk to ultimately get to a healthier state from which I will start recovering muscle mass from some weight lifting training. Currently that goal is hampered by an umbilical hernia that has become mandatory to repair. The weight loss is going to make my surgery much more survivable.
Dale
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Hi Dale – I started Ultomiris about 30 days ago. I have been taking Prednisone and Cellcept since diagnosis along with Mestinon. I had to add IVIG in about 6 months in due to flare and have continued with IVIG and prednisone in the hopes Cellcept would be enough. Unfortunately that has not been the case. Ultomiris made a huge difference immediately for me. Just the loading dose was life changing. My neurologist has reached the conclusion I did – after giving cellcept 18 months, and not being able to taper off prednisone without flaring, cellcept isn’t going to work. I am hopeful that I will be able to leave at least the cellcept and prednisone behind. I was able to immediately stop taking mestinon. I wish you luck on this journey and hopefully you will find relief wit Ultomiris.
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I get my 2nd infusion on 3/5, next week! I’m just taking mestinon time span currently. It might be starting to work as I have more energy in the mornings, but if I get busy in the AM I run out of steam by 1-2 PM. Thanks for your reply.
Dale
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