Nan

Hi Amy. I have had Hashimoto’s for ages, and for a while there I was hyperthyroid. I had both anti-TPO and anti-thyroid antibodies. When I was given methimazole/Tapazole to counter the hyperthyroidism, I rapidly became hypothyroid. My endocrinologist couldn’t believe how fast the medication made me hypo. So be aware that that could happen, and…[Read more]

In mid-October I had a flu shot in one arm and the most recent Covid booster in the other. No problems except perhaps a bit more tired than usual for a few days. I skipped my weekly dose of methotrexate afterwards so that the vaccines would have time to build my immunity. This was my fifth Covid shot.

Fingers crossed for you, TheresaG. Either way, please keep us posted. Hugs.

Thanks for letting us know how it is going, Gary. It’s so nice to hear a positive report.  Are you antibody positive?

Hi Lisa. I sent you a PM. There is at least one knowledgeable, seronegative-friendly neuromuscular doctor in Nashville. 🙂

Hi Jennie. I am not a doctor, but if ever there were a candidate for trying one of the new FcRN inhibitors like Vyvgart, it sounds like you. A few months ago, my dosage of methotrexate was increased to 15mg/week. Since you haven’t tried methotrexate yet, I will let you know if it works. I also had to discontinue Cellcept and Imuran due to side…[Read more]

The Myasthenia Gravis Foundation of America is hosting their (virtual this year) annual National Patient Conference this Thursday and Friday, February 10th and 11th. The session about seronegative MG will be on Thursday at 4PM Eastern Standard Time. It’s free to register at Myasthenia Gravis Foundation of America (MGFA)

It will be recorded if…[Read more]

Maureen, I was on azathioprine for 23 months. After the first few months, my neurologist checked my CBC and liver enzymes less frequently – every 3 months, I think.

Hi Amy. Mestinon makes my nose run.

The swallowing tests aren’t bad at all. The more high-tech one that runs a tiny camera up your nostril into your throat so you can watch yourself swallow was entertaining to me.

Long before I was diagnosed with MG, my swallowing tests revealed that I have oral-pharyngeal dysphagia. Once the ENT or the speech…[Read more]

Amy, Plex (Plasma Exchange) helps me a great deal, especially with swallowing. I have had 116 treatments over the past three and a half years. My neurologist and I hope I can wean from Plex as soon as we find an effective medication regime. For now, every two weeks I go to an outpatient apheresis unit of a local hospital for the treatments. Each…[Read more]

I am seronegative and was diagnosed through a single fiber EMG. I am curious if any seronegative MGers have found a treatment that works. I am currently taking 10mgs prednisone/day, 15mgs of methotrexate/week, lots of pyridostigmine/Mestinon, and Plex every two weeks. I am still symptomatic, especially when the Plex wears off, but hope that…[Read more]

Thank you, Theresa. It’s great to know that Vyvgart might still be another possibility for seronegatives like us. I should know in 2-3 months whether this higher dose of methotrexate (15mg./week) will allow me to discontinue the Plex.

Amy, thanks for the suggestion. Tacrolimis is definitely on the short list for drugs I will try next if necessary. My weekly  methotrexate dosage has just been increased, and my neuro ordered immunoglobulin bloodwork, so we will see if IVIG or subcutaneous IG is an option rather than a port if my vein continue to be uncooperative. I am feeling…[Read more]

I had my neuro appointment yesterday. My oral methotrexate dosage has been increased to 15mg. per week. Since he ordered bloodwork to check my immunoglobulin levels, I guess he is considering IVIG then subcutaneous IG if my antecubital veins continue being recalcitrant. Fingers crossed 🙂

Because it had been publicized as being effective for all types of MG, including seronegative, my neurologist and I had been looking forward to Vyvgart’s FDA approval. I am seronegative, and although I am currently taking prednisone, methotrexate, Mestinon, and Plex every two weeks, I am still symptomatic when the Plex wears off. We had hoped…[Read more]

Dear Stanley, Thank you. This has been an especially challenging week. Your kind reply means the world to me.

Stanley, this is off topic, but what is it like having a port? For the past 2 1/2 years I have been having plasmapheresis treatments, and it looks as if my antecubital veins aren’t going to hold up much longer. Plex helps me more than anything, but I am leery about having a port installed. I had hoped that by now we would have found an…[Read more]

It’s not on the list, but Gabapentin (Neurontin) worsened my disphagia. I almost choked to death. Thank goodness someone was nearby and Heimliched me!

Theresa and Jennie, it looks like we are all in the same boat. The problem with  Vyvgart being prescribed off label, is that our health insurance almost certainly won’t pay for it. Especially if it is expensive, which I suspect it is.

Theresa, if you don’t mind, please post (or PM me) and let us know what your neurologist says at your January…[Read more]