Renna
Forum Replies Created
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Hi Theresa,
Please add me to the seronegative group. I have been diagnosed with gMG since December 2021 and it took years to get the diagnosis and multiple doctors to understand what was going on with me. All blood tests came back negative for MG antibodies until a neurologist finally did an EMG and confirmed the gMG diagnosis. We need to be represented and allowed access to all these new meds for seropositive!
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Has anyone who tried Vyvgart and had a normal thymus gland had a surgery to remove it? If so, did it help? Also, what was the approximate age group and gender and how far along was your MG when you had a thymectomy to remove the normal thymus gland.
Trying to determine if I should remove my normal thymus gland so I can get relief of gMG. I’m on Vyvgart now. Already did 3 cycles and the timing between each cycle seems to be getting less and less for relief of symptoms. Having major issues with muscle weakness and difficulty with walking, swallowing and breathing.
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I have been on Vevygart since January and it truly helps me and has been a game changer like many have noted in this thread. The only issue is it doesn’t hold very long and it seems like I do one month of infusion cycle then take a month off then back to the next infusion cycle which usually makes me feel good but by week 3-4 post 4th infusion, I slide back into muscle weakness. I WISH it would last LONGER between infusions as the schedule is very rigid with once weekly infusions for 4 weeks 🙁
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Before I was diagnosed with MG, I had a doctor use botox to stop my right eye from tiring and constant blepharospasm. It helped a little but a few months later I was diagnosed with MG by another neurologist with an EMG test. I was told I should not get botox as I’m already experiencing muscle weakness and botox could cause adverse reactions facially. My MG affects my legs, walking and balance as well as shortness of breath and difficulty swallowing, so it is not facial nor ocular but the doctor said to avoid botox and I’ll have to live with the bothersome blepharospasm in my eye.
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My legs get heavy and suddenly I can’t walk, my balance is off and I start tripping on my own feet. When the meds wear off, I always worry about falling and have come close to that at times. Stairs and uphills are always a challenge and swallowing becomes harder. MG and this muscle weakness frustrate me more than I can put into words, it angers me that I had to give up tennis and an active lifestyle.
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Hi fellow MGers –
Has anyone else who got the Vyvgart infusions, experienced a change in temperament or mood ? The first time I got Vyvgart I felt physically much better and regained my strength and walk, but I felt off mentally / emotionally. I can’t put a finger on it, but I just started the next round and I’m at the 1st of the 4 infusions, and once again I was feeling very anxious and irritable post infusion last week. Has this happened to anyone else?
Vyvgart is still fairly new, so not sure of statistics on this, but would love to hear back from anyone who has felt this way or experienced any type of short temper or irritability as a result.
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Like Theresa, I am seronegative. Finished my 4th Vyvgart infusion last week and I feel SO MUCH better. I pray it will stick. I forget to take mestinon now as my body isn’t reminding me to take it, like it used to with the constant muscle weakness. Still having difficulty with swallowing food but my legs are stronger and I’m walking better,
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Hi Tracy,
Did you ever get any comments back to this question? Doesn’t look like anyone answered. I’m curious as well since the neurologist recommended I get a thymectomy. My CT scan came back normal, but I was told it could help achieve MG remission or even cure it (33% chance). I was only diagnosed a year ago so I want to get the facts and stats before doing anything surgical. Hope to hear more about this!
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Thanks Jessica, I sent an email. last night and waiting for a reply.
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Hi Jessica,
Hover over the person’s name and then cllck – it will take you to the person’s profile and you can send a direct message.
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Hello Minbran,
Thank you for replying and so sorry you are having such a hard time with diet and all these modifications and complications :(. I hope Vyvgart helps you and you feel better.
I also hope that the makers of vyvgart can look into what is causing this mysterious weight gain. I am NOT on steroids and yet the weight has been creeping up every month since I started my cycles, one month on and 2 months off since beginning of this year. The silver lining is Vyvgart is helping my MG symptoms but it doesn’t last more that 3-4 weeks in between cycles and I cannot be as active as I used to be. This bothersome weight gain side effect is making me consider trying something else.
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Hello Steph,
I appreciate your feedback and I am convinced as more of us take Vyvgart, and the population numbers of patients on vyvgart grows, we will see this weight gain side effect in more people. Clinical trials only had 846 if I recall, when reading the PI, and that’s not a large enough number plus with new meds, as more people take it, additional side effects have to be tracked and documented. I’ve also been on Vyvgart for about 7 months and by the 3rd cycle my weight just keeps creeping up while I eat less! Exercise isn’t easy with my muscle weakness but I am doing everything I can to keep active and stop this side effect of meds weight gain!
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Hi Jerry,
that makes sense I know someone else with MG who lost 20 lbs coz he couldn’t chew or eat but when he got on the meds, he regained some of the weight back. My MG affects my movement, balance and legs so I can’t exercise the way I used to and despite eating less to maintain a healthy weight, I still keep gaining lbs especially since starting the Vyvgart earlier this year. As more patients take vyvgart, I would be curious to see if the number of people who notice this side effect, grows – no pun intended 🙂
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Hi Scott, thank you for sharing. I hope to get more details on doing a thymectomy and also would like to asses the risk of removing it in terms of long term immunity as T-cells also help the immune system. Please do share the research on thymectomies that you mentioned. I would like to learn more and weigh all my options either way!
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Wow Scott, you have been through a tough journey with MG. It is good to hear you are better now and the thymectomy helped you recover from bothersome MG despite all the post op troubles at the hospital. Also good to know you were about 53 when you got the thymectomy and even then, the surgery was a success. Good luck to you!
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Thank you James for the link to the study. This is interesting and I was diagnosed 3 years ago at 47 and I will be 50 this year, so I feel like I am racing against time!
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That’s my concern about the thymectomy. It is not an easy surgery and not for certain that the MG symptoms will go away. I have had 2 CTs done in the past year and told I still have the thymus gland so it will take a very skilled cardio thoracic surgeon to remove it and all the tissue around it (close to heart and lungs) to try and get remission from MG. I also don’t want to be like this for the rest of my life having to take many meds and infusions every month. Debilitating fatigue and lack of mobility are not a good quality of life. Praying for full recovery and staying optimistic.
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Hi Carol,
I loved reading that you didn’t need another round of Vyvgart from August 2022 until February this year! I, too, got Vyvgart for the first round of infusions in December and was feeling strong and able to exercise again (cardio) but by day 30 post the 4th infusion, I started getting weak again so I just started round 2 infusions. The timing of the weakness was right after the intense workout so I am not sure if I caused it by overdoing the workouts or it was wearing off anyway. I hope my next round will hold a lot longer than 30 days!
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That’s great to hear Edward. Vyvgart has helped me a lot and for the first time in 2 years, I am able to walk better and even do some light exercise which had to be put on hold due to risk of falling and lack of balance.
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Happy New Year James! Have you also tried IVIG? Since Vyvgart didn’t work for you despite having the biomarkers, and you are seropositive, I’m wondering what other options your HCP might have suggested.
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Thank you for explaining that Scott! This patient support program sounds very good and I hope you get the information you need to do what’s best for your health journey.
In my case, my neurologist requested the Vyvgart and went through the insurance route then I got my OOPs sent over. Hope 2023 offers us better days with good health.
Renna
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Hi Scott,
What is the Path process? Never heard of it. I, too, am very needle phobic, but after a year of IVIG every 3 weeks and taking up the whole day Vyvgart seems a little easier somehow for me. It’s once weekly for 4 weeks, but my infusions are usually done within 4 hours at most and somehow this has been an immediate improvement post infusion which I’m praying will last a while.
Good luck to you whatever you decide to do! Keep me posted and a happy New Year as well.
Renna
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I feel your pain Theresa. I’m often saddened when my body won’t let me do the basic stuff I used to do and I’m an optimist that I will conquer this MG and be normal again; play tennis, be athletic, walk normally, get up from a chair without help, climb up the stairs and even downstairs without assistance. My voice also fades and I have difficulty swallowing. It’s very frustrating with good days and bad days. Hope for more good days.
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Hi David,
Are you seropositive or seronegative? If you don’t mind my asking, why are you hesitating to take it, if it’s approved for you?
My hope is it gets approved for seronegative MGers, as I feel much better since my vyvgart infusions began and like my old, healthy self, which is giving me so much hope to keep improving. Wishing you all the best, whatever path you decide to take.