[Nan]

Michael, I didn’t see any great improvement until a few days after the fourth infusion of my first round — maybe it will be the same for you. However, I am seronegative and was responsive to plasmapheresis. I am hoping that you are just having a slow response.

[Nan]

For me, most of the positive effects of  Vyvgart didn’t manifest until a few days after the fourth infusion of the first round. It was incredible. I have tried Cellcept and Imuran without success and have been taking methotrexate for the past two years without much symptom relief. Vyvgart is even better at treating my severe generalized seronegative MG symptoms than Plex.

[Nan]

Yay! I had my first Vyvgart infusion yesterday. I am seronegative, 11 on my last ADL questionnaire. I am hopeful. Thanks everyone, especially the seronegatives, for the Vyvgart information you have posted in this thread. It has been helpful for me.

[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 speak up if it does.

If I had to choose, I prefer being hypo to being hyper. While you are hyper, you might want to avoid iodized salt and if you can, eat plenty of broccoli, cauliflower, and soybeans (all goitrogenic foods).

My endo (not the one who prescribed methimazole) said that he thought my thyroid has probably burned itself out. I did well on Synthroid for a few years but eventually my free T3 was always below the normal range, and I felt hypo, so although I was skeptical about the possibility of it helping, I asked to try Armour thyroid. Armour works well for me, but a while after being on immunosuppressants for MG, I became hyper. We decreased my Armour by half, and I have been fine for the past two years. I am changing over to NP thyroid soon because it is less expensive than Armour. Insurance doesn’t pay for natural thyroid.

[Nan]

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.

[Nan]

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

[Nan]

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

[Nan]

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

[Nan]

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 effects. Plex helps me alot, and 10mgs prednisone/day seems to be keeping me stable.

I don’t know how you take so much Mestinon — 120mgs at a time is as high as I can possibly go. I am trying to get by with much less; if it weren’t for the side effects, I would use more.

[Nan]

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 you want to watch later. I hope to at least catch the part about seronegative MG.

[Nan]

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 pathologist determines what, if anything, is the problem with your swallow, they can teach you techniques which may improve it. Hopefully the Cellcept will improve your dysphagia. For me, Plex works like magic.

In the meantime, here are some safe swallow tips for when your dysphagia is acting up:

*Take small bites.

*If liquids aren’t a problem, wash down the small bites with a sip of water.

*Try not to talk when you are eating.

*Puree everything. I used my food processor. Although some people can eat potatoes, I couldn’t. Lettuce was also off-limits. My go-to snack food was those little plastic containers of unsweetened applesauce.

* Review how to Heimlich with your loved ones. This made me a little unpopular at family dinners for a while. 😉

[Nan]

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 treatment takes about two hours — for some people it takes a bit longer. So far, I haven’t had to have a port installed since the nurses have been able to use the veins inside of my elbows. Anyone, please feel free to ask me anything about my Plex experiences.

My first MG symptom was double vision — although I remember being bedridden the previous summer during a heat wave, which was probably an MG symptom. Since I am seronegative, I had just about all the classic MG symptoms for over twenty years before being diagnosed with MG. My SFEMG was stopped early at 16 pairs, 4 of which showed abnormal jitters.

I am thrilled about this thread and about the possibility of meeting other people with seronegative MG via Zoom. Count me in!

[Nan]

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 recently raising the methotrexate from 10 to 15mg/week will be effective.

[Nan]

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 🙂

[Nan]

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 that, at the very least, Vyvgart would have freed me from having to have regular Plex treatments. Now it looks as if I will be taking more methotrexate or perhaps try yet another immunosuppressant (methotrexate is my 3rd besides prednisone), and since my antecubital veins are balking, I will probably have to have a port installed.  Since I am running out of options, I would have been thrilled to take a drug that is new on the market.

For a couple weeks, I was upset about Vyvgart not being FDA approved for SN MG. But thanks to the kindness of MG patients who have posted on support sites like this one, I have reconciled myself to the idea of having a port.

Vyvgart apparently has a different molecular target from previous MG treatments. I am looking forward to (wistfully) hearing how patients do on it.

[Nan]

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

[Nan]

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!

[Nan]

Wayne, best of luck to you. Keep us posted!

[Nan]

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.

[Nan]

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.

[Nan]

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 optimistic.

 

 

 

[Nan]

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 immunosuppressant that works for me so that I don’t have to continue Plex treatments, but unfortunately since I am seronegative, we are running out of immunosuppressants to try.

-Nan

[Nan]

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 10th appointment. My next neuro appointment is January 20th.