[Kent Moore]

The only reaction I would get from IVIG was an afternoon/evening headache after day one’s infusion. Just an obnoxious headache, really. If I took a couple Tylenol, it would go away. Unfortunately, the IVIG lost its effectiveness with me after about a year or so. They have me on Vyvgart now and it’s working great. Gonna ride the wave as long as I can…

I wonder if you may have coincidentally contracted a bug totally unrelated to the IVIG. I guess you won’t know unless you try it again (just remember the Tylenol ;-). Did they have you take some Tylenol and benedryl BEFORE each infusion? That might help. I guess that’s standard procedure for Kaiser when administering GammaGuard.

I’m sorry that this happened to you. I hope you can get the full protocol next time and that it works for you. When I began a couple years ago, it was wonderful…and I know many folks vouch for its effectiveness after having been on it for years.

Good luck to you.

[Kent Moore]

Well…I wasn’t going to jump in on this one because Jodi specifically asked about Hytrulo — but the discussion seems to have morphed into one regarding Vyvgart infusions. So, here goes —

My most recent treatment was IVIG. A year ago when I started, the IVIG seemed to make a lot of difference in a good way. No more slurred speech, I was able to sing, and my overall stamina was leaning towards normal. Then last Dec., I had my annual COVID vaccine. This was the second time I had the Pfizer vaccine. (The first 4 were all Moderna.) The vaccine itself — no problem. But my MG symptoms seemed to worsen. By Christmas, I wasn’t able to get thru a Christmas carol without as severe lisp. I would actually just stop singing; too tired and it was frustrating. I had been taking 2 Mestinon tabs (60 mg ea) every 4-6 hours. Bt the middle of Jan., I needed the Mestinon every 3 hours — and we bumped my prednisone to 60 mg a day. Was this all a coincidence with the Pfizer vaccine? I don’t know, but this was the second time I had experienced and increase in my MG symptoms. Never with the Moderna.

Anyway, after trying a few tweaks for a month or so, to no avail, my neurologist and I decided to give the Vyvgart a try. As many of you have experienced, my initial protocol was one infusion per week for 4 weeks. Two days after the first infusion, my family immediately noticed improvement…and things have only gotten better. I just completed my last infusion yesterday. As I’m writing this entry, I’ve realized I haven’t had any Mestinon for almost 10 hours. Not on purpose, the day just got away from me. I just went (5 pm) and took a pill and a half, and I’ll try to remember to do the same at bedtime.

For me, it has been a miracle drug — my wife’s words. I almost didn’t want to share this fearing that I might jinx the whole thing. After having MG for 8 years now, I know that I’ve just gotta ride the wave while I can. Knock on wood. That hurt.

[Kent Moore]

From my experience, go in well hydrated. I’ve also found, at least for me, that it’s easier for the nurse to find a good vein on the back of my hands. Doing this also prevents most occlusions compared to when I have them tap into the crook of my arm. Invariably, when I would get up to use the restroom, I’d set off the alarm on the IV pump. Of course, this wouldn’t happen if I asked to be disconnected before heading to the restroom, dragging the IV pole along with me. (I’m also on a couple diuretics and can never make it through the 3 1/2 hours 😉

[Kent Moore]

Not sure if this helps you in your specific situation, but I already used a CPAP machine for apnea that was diagnosed years before my MG.  I can tell you that during those periods when I’m feeling a bit exhausted and labored in my breathing (which is sometimes, for me, exacerbated when I lie down), firing up the CPAP provides instant relief.  It’ll be interesting to see if anyone has tried one who doesn’t experience sleep apnea already…

I wish you all the best —

[Kent Moore]

I think I cheated.  Sorry.  I, here forthwith, change my response to —

“Trackless roller coaster.”

[Kent Moore]

A trackless rollercoaster.

[Kent Moore]

I was told by my neurologist that it is not hereditary.  I guess it’s just the card we have been dealt.

[Kent Moore]

No — however, I’ve experienced an issue with that nose-and-throat “valve”, as it were. It seems just the opposite of what you’re asking.

Oddly, if I’m experiencing overall weakness, or if I’m nearing the end of a Mestinon dosage period, there are times when I’m attempting a hearty blowing of the nose (we have cats). The blast of air that I’m expecting through my nose and into the kleenex will, instead, come out of my mouth. This makes for an interesting sound (kind of funny, actually).

After a good chuckle and more intense concentration, I do a restart and things work fine. I probably do more of a controlled blast. Kinda weird…

[Kent Moore]

Chris,

First off, it sounds like you have a wonderful ophthalmologist. That was a good catch.

My particular issues with MG haven’t been ocular, but I have a close friend who does.  When she has flair-ups, her neurologist tends to put her on a moderate prednisone protocol which tapers off after a couple weeks.  That and tweaking the Mestinon for awhile seems to really help her.

Interestingly, a similar approach has worked for me — and I have what I guess is called generalized MG.  While RV camping a couple summers ago at 7200 elevation, I began to experience extreme muscle fatigue and mildly labored breathing, especially when I lay down to sleep (weird). We got off the mountain the next day and things got a bit better.  I also went and had any heart issues ruled out.

I had experienced that same kind of muscle weakness before from the MG, but not the breathing issues. When the heart and blood tests came back showing no issues, my neurologist put me on a 3 week protocol of prednisone.  The results were almost immediate.  I’m now on 1 10mg pill of prednisone per day, along with 2 Mestinon every 4-5 hours, and I’ve been doing pretty well. We even took the same trip this past summer and there were no issues.

It will be interesting to see what the summer brings for you (I don’t know if you live in a hot climate). Some find that their MG does tend to flare up in the heat of the day.  Just be aware that you may need to pace yourself.

Best of luck to you —

[Kent Moore]

I’ve been taking good ol’ Mestinon since 2017 — 90-120 mg every 4-6 hours. The only effects have been positive. Through the years, my neurologist and I have needed to add prednisone, but that’s been on as an as-needed basis (with careful tapering back). A couple months ago, we also began a monthly IVIG protocol, 2 days back-to-back, 500 ml each day. Feeling almost normal. The loss of half a day for each infusion is a bit of a pain, but I can speak for extended times and sing again! Amen.