Debbie sandwra
Forum Replies Created
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I’m on vyvgart shots. 4 weeks on and 4 off. Also take 5 prednisone and cellcept. And still my eyes are weak. However everything else is doing well. Swallowing and speech. I was also on plasma exchange until I was able to do well without it. Ultimaris did absolutely nothing for me. I’m so glad it works for some of you. It literally did nothing for me. I pray these new trial drugs will get FDA approved so we have more options. Blessings to you all.
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It’s been 4 1/2 years for me and I’m at 5 mg day. Lowest I’ve gotten is 2 1/2. Seems even with my other drugs prednisone is the only drug that keeps me from double vision. You may be fine with what your dr is suggesting. Quick on and off. Depends on how severe your symptoms are.
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Im on 5mg now and have been up and down over 4 years. Any time I was almost off my eyes would start up again with the double vision. Seems prednisone is the only thing that helps with my eyes and I’m on numerous meds. Trust your dr. to know whats right for you. Because you dont want any relapses of your symptoms. Weight gain is very frustrating. Im also on vyvgart which adds more weight then 5 mg prednisone. You are at least down to a reasonably low dose. Good luck with everything.
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Im currently 4 on and 4 off. However Im also on my 7th month of cellcept (hoping it will kick in) Was told up to a year for it to work. And still take 5 prednisone. Ive had it rough. Just like MG affects everyone differently the medications also work differently on everyone. Most important is the trust you have in your dr to know what to do. Best of luck
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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.
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Covid vaccine and booster triggered me so bad that never again. And the Dtap that I got when my grandson was born same thing. So no more vaccines for me.
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I had a different experience. I used a top surgeon and he paralyzed half my diaphragm. Fortunately I’m ok with just half working. It also did nothing to help me. Im 4 years in and this year was the worst of my life. 3 hospital stays. So the surgery doesnt work for everyone. I dont want anyone getting hopes up that this is a cure.
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Ultimaris did absolutely nothing for me. Vyvgart works but doesn’t last. I’m a very tough case. Struggling!
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Vyvgart infusions didn’t work for me for very long. The 3-4 weeks off is the killer. Is it just me or do another people have a problem with the time off as well. And insurance won’t cover weekly no time off.
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Ive been on vyvgart for a while now. I have almost no side effects. I do get swollen eyes which is kind of weird but thats all. Unfortunately I have to do them weekly with no time off. After 6 days symptoms come back. It worked for a few months and then I couldnt take the time off any more. Like everyone else this disease is so crazy and everyone has different issues.
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Anything done to a body with MG is crazy. I had a skin cancer removed with numbing and an incision and now my eye is drooping and back to double vision. Our bodies do not like stress. I take vyvgart infusions. They help sometimes but not always. So be careful with what you put into your body.
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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
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sadly ultimarus did nothing for me. Vyvgart works so much better. But everyone is different as we all know!!!!
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I am on it. Have been told it takes up to a year to work. I chose to go on it because I was so bad. I’m on month 9. I’m thinking it’s starting to work because I’m able to do my Vyvgart shots 4 weeks on and 4 off and still manage . I was not able to do that before celcept. I’m also on 5 prednisone. I’m hoping at a year it will work even better and can finally get off prednisone. It’s been 4 1/2 years on. My opinion is add it onto what whatever you are doing.
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Weight gain. And extra weight gain with Vyvgart tooooo. Bruised skin. Osteoporosis. Teeth chipping. Ugh
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If the symptoms worsen 5 wont help. It will be back to 60 all over again. Starting all over again. Something to think about
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I was curious about the sores too. I also tried switching to Ultimaris. Did absolutely nothing for me at all.Best of luck. Hope it works for you.
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Complete total frustration .
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This may sound a bit depressing but vyvgart was not the help I had hoped for. It worked for a month and I thought a miracle happened. And then it worked less. And less. Stopped working completely on my eyes. Helped a few days a week. Then you are supposed to stop for like 3-4 weeks. Forget it. I ended up in the hospital doing plasma exchange. Ugh. I’ve yet to find anything that will last and help with the swallowing and speech. The prednisone still works best with the eyes.
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I also had a thymectomy. Found it after my mg symptoms started and I diagnosed. It’s been over 3 years. Unfortunately the thymectomy did nothing to help my symptoms. I’ve tried every drug and infusion available. I’m now on weekly plasma exchange. And hoping for new drugs.