Myasthenia Gravis News Forums Forums Healthcare and Treatments Have you received Vyvgart Hytrulo (efgartigimod alfa and hyaluronidase-qvfc) for Myasthenia gravis?

  • Jonathan

    March 25, 2024 at 3:52 pm

    I am currently 2 doses into my first vyvgart cycle and I’m having adverse affects. The day after I get the shot, I have a horrible back pain and I don’t wanna get out of bed. I am also experiencing unusual tiredness and a loss of appetite. I’m having to force myself to eat and I often find myself sleeping in my car on my lunch break. Even after 2 doses, i am not seeing any improvement and my vision is starting to be affected.

    I’m going to discuss going back to IVIG treatments with my doctor. My body seems to reacted to that very well with no side effects whatsoever

  • DocTim

    March 27, 2024 at 2:20 pm

    I have just completed Dose#2 Vyvgart infusion. It must be working… I have had 106 IVIG infusions since Dec 22… every 3 or 4 weeks & needed every one of them – also Cellcept & Mestinon all that time. It has been 6 weeks since my last IVIG, and anecdotally there is no way I should have the strength of speech I now have.

    After the 2nd dose, my BP was up some at night & I was exhausted about 2 hrs earlier than normal sleep time. Cautiously optimistic about its success for me. Thankful for good care thru’ VA Heatlh & a great nuero.


    March 27, 2024 at 3:06 pm

    Vyvgart actually made me feel worse. This is what I was put on after IVIG treatments stopped being effective Now I am on a new treatment. The gap between treatments is 8 weeks. By week 6 I typically am hanging on until the next infusion.

    IVIG was helpful for eyesight but not for swallowing. Vyvgart was not good for eyesight and muscle soreness. New treatment good for all except blurred vision. I am really struggling with that right now along with sinus problems (epic).

    • Jonathan

      March 27, 2024 at 3:13 pm

      After my thymectomy 3 years ago, my MG is only ocular. My body is no longer reacting to normal meds which is why we moved to infusions. IVIG clear up my eyes within a week but vyvgart does not see to be helping

  • CAPacheco

    March 27, 2024 at 6:32 pm

    I received two rounds of once a week, for four weeks Vyvgart IV infusions, not Vyvgart Hytrulo injections. The first round gave me almost three months of relief and I enjoyed a “real life” but the second round effects didn’t last for more than a few weeks. I am now scheduled to begin Ultomiris infusions, which my new neurologist swears by. We shall see. I did receive the meningitis vaccines to prepare for Ultomiris last year but then went forward with Vyvgart. I had considerable back pain after each Vyvgart infusion as well as severe migraine-like headaches for days following each infusion.

  • Wayne Eisen

    March 28, 2024 at 11:06 am

    I had 2 series of Vyvgart infusions recently

    The infusions had no effects… no improvements from them. I’ve been getting weaker lately.

    I’m on 50 mg of prednisone daily now. The large amounts of collagen I add to smoothies, soups and cereals hve improved my bone density over the past few years!

  • Kent Moore

    March 29, 2024 at 7:10 pm

    Well…I wasn’t going to jump in on this one because Jodi specifically asked about Hytrulo — but the discussion seems to have morphed into one regarding Vyvgart infusions. So, here goes —

    My most recent treatment was IVIG. A year ago when I started, the IVIG seemed to make a lot of difference in a good way. No more slurred speech, I was able to sing, and my overall stamina was leaning towards normal. Then last Dec., I had my annual COVID vaccine. This was the second time I had the Pfizer vaccine. (The first 4 were all Moderna.) The vaccine itself — no problem. But my MG symptoms seemed to worsen. By Christmas, I wasn’t able to get thru a Christmas carol without as severe lisp. I would actually just stop singing; too tired and it was frustrating. I had been taking 2 Mestinon tabs (60 mg ea) every 4-6 hours. Bt the middle of Jan., I needed the Mestinon every 3 hours — and we bumped my prednisone to 60 mg a day. Was this all a coincidence with the Pfizer vaccine? I don’t know, but this was the second time I had experienced and increase in my MG symptoms. Never with the Moderna.

    Anyway, after trying a few tweaks for a month or so, to no avail, my neurologist and I decided to give the Vyvgart a try. As many of you have experienced, my initial protocol was one infusion per week for 4 weeks. Two days after the first infusion, my family immediately noticed improvement…and things have only gotten better. I just completed my last infusion yesterday. As I’m writing this entry, I’ve realized I haven’t had any Mestinon for almost 10 hours. Not on purpose, the day just got away from me. I just went (5 pm) and took a pill and a half, and I’ll try to remember to do the same at bedtime.

    For me, it has been a miracle drug — my wife’s words. I almost didn’t want to share this fearing that I might jinx the whole thing. After having MG for 8 years now, I know that I’ve just gotta ride the wave while I can. Knock on wood. That hurt.

  • Debbie sandwra

    April 3, 2024 at 3:58 pm

    Ive been on vyvgart infusions twice. First time it worked great in the beginning and then stopped working as good. However nothing else has done anything for me as I’m a very tough case. The only thing that has kept me out of the hospital is a port and outpatient plasma exchange. So I went back on vyvgart weekly. No time off. With currently once a month plasma exchange and so far doing well. I’m going to try the hytrulo instead as my veins are horrible. 2 more weeks of the infusions and then I switch over. Id be happy to let you all know how it goes. And btw I agree the eyes are the hardest to clear. Im down to 5 prednisone and need it to keep eyes from going double. Been on prednisone since I was diagnosed right before covid. I also take cellcept. On 4th month so dont know whether it will help or not. Anyone else on it? Its certainly a rough disease for many of us. Love to you all.

    • Jonathan

      April 6, 2024 at 9:26 am

      Yes I am on cellcept as well. Currently 750 mg along 30 mg of prednisone to help me while I’m finishing up the vyvgart cycle. I’m seeing my doctor Tuesday to discuss just doing ivig regularly since vyvgart is making it worse.

      I agree with wanting to do the vyvgart stomach Injections instead of the vein. It is much quicker. They only thing is process of the medicine going in hurts but that only will only take about a minute. The initial stick itself was not bad at least for me.

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