@renaamer
-
Renna replied to the topic MG Crisis Frustrations in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 3 months, 1 week ago
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.
-
Renna replied to the topic Vyvgart side effects in the forum Healthcare and Myasthenia Gravis 3 months, 2 weeks ago
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, a…[Read more]
-
Renna replied to the topic Vyvgart side effects in the forum Healthcare and Myasthenia Gravis 3 months, 2 weeks ago
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. T…[Read more]
-
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months ago
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.
-
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months ago
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.
-
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months ago
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
-
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months ago
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 in…[Read more]
-
Renna replied to the topic Types of Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 5 months ago
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 d…[Read more]
-
Renna replied to the topic What happened to efgartigimod/Vyvgart for seronegative MG? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months ago
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,
-
Renna replied to the topic Thymectomy in the forum About Our Forum/Welcome Lounge 5 months ago
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 an…[Read more]
-
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months ago
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…[Read more] -
Renna posted a new activity comment 5 months, 1 week ago
@jodi-enders thank you for the links and info on Vyvgart, which is what I meant! I was misspelling it and not realizing, so appreciate the info you sent me.
-
Renna posted a new activity comment 5 months, 2 weeks ago
Thanks for letting me know Theresa! Hope you are doing better with the treatment. Are you on Vyvguard as well?
-
Renna replied to the topic Types of Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 5 months, 2 weeks ago
Jodi,
Thanks for the detail and describing different types of MG. Based on your layout, I have early onset (diagnosed at 47 but started experiencing symptoms at 45), seronegative, gMG (affects multiple muscles and causing weakness in the legs), and to some extent droopy eyelids. Used to be athletic and played high impact sports (tennis), but had…[Read more] -
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months, 2 weeks ago
Hi Edward,
I was on IVIG every 3 weeks for the past 10 months. When I got Vyvguard approval, I had to stop IVIG for 3-4 weeks before getting the first dose of Vyvguard. I believe it is due to the mechanism of action (MOA) with the Vyvguard versus IVIG. With IVIG you are getting infused with IgG antibodies to boost immune function, whereas wi…[Read more]
-
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months, 2 weeks ago
Hi David,
I think it is too soon for long term results as Vyvguard was only approved a year ago. I started Vyvguard infusions 3 weeks ago and after one infusion, I noticed an improvement with my legs and movement. I also don’t take the mestinon as I used to (60mg 4 times daily), coz it used to be every 3-4 hours, my legs would get heavy, I w…[Read more]
-
Renna replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months, 2 weeks ago
It is good to read many of the comments and reactions to Vyvguard. Some are doing better while others are not or still waiting to see how it will impact their health, hopefully for the better.
I am seronegative AchR and diagnosed with MG and a year ago, I couldn’t walk properly, had balance issues and was tripping over my legs, and almost fell…[Read more]
-
Renna posted an update 5 months, 2 weeks ago
Anyone with seronegative MG get approved for Vyvguard? If yes, have you gotten the infusions and did it help?
-
Hey Renna! Did you mean VYVGART? If so, here are discussions on our forums where people are talking about it and seronegative MG,…[Read more]
-
@jodi-enders thank you for the links and info on Vyvgart, which is what I meant! I was misspelling it and not realizing, so appreciate the info you sent me.
-
-
-
Renna posted an update 5 months, 2 weeks ago
@theresa Thank you for sharing that you were also diagnosed with an EMG test. Can you let me know if your AChR and MUSK antibodies blood tests were positive or seronegative for MG? It’s hard to diagnose when the labs are seronegative which was my case so it took a long time to get a diagnosis.
-
@renaamer I am seronegative. I am very fortunate as I was diagnosed pretty quickly. In a few months time I had a diagnosis.
-
Thanks for letting me know Theresa! Hope you are doing better with the treatment. Are you on Vyvguard as well?
-
I do not. I currently am only on the one drug twice a day but my doctor just discussed we may need to add an immunosuppressant drug in the near future.
-
-
-
-
Renna changed their profile picture 5 months, 2 weeks ago
- Load More
I do not. I currently am only on the one drug twice a day but my doctor just discussed we may need to add an immunosuppressant drug in the near future.