[TheresaG]

No, no, no.

Take a deep breath.

If you were to stop suddenly, you would quite likely throw yourself into a crisis. This is a very very hard disease to manage and it SUCKS. That said, it does take managing it and somewhere you will find what works for you. For myself, after 10 years, only 3.5 diagnosed, I’ve only had maybe 6 weeks of what I will call normalcy. So will you get remission? Probably not, will you have some great days, likely, good days yes, bad days, for sure.

My neuro is currently getting approval for me to switch from Vyvgart to Rystiggio. I’m also on 6 mg prednisone, (reducing), and Mestinon, 4-5 x’s day. I hate being the Guinea pig but he says he has patients that do better on Rystiggio, so try it I will.

What I am holding out for is the CarT cell therapy. It really is promising. I don’t think it will be here until 2026, so patience.

What info know is I am in a better place today than prior to Vyvgart. Eyes keep getting worse, scared driving will not be a luxury some day sooner than later.

As to weight, yeah the prednisone messes that up. I’m even wondering the Vyvgart? But the prednisone reduction took a year for me to get rid of the round face it is all such a slow process. I’m 70 now, so just trying for every good day or hour I can get. It requires lots of naps and watching TV. Never one of my habits. I do know it COULD be worse. My 55 year old daughter is fully in a wheelchair, unable to walk, almost has lost her arm muscles to due to some kind of muscle disease. Not MG. She has endured this for 30 years now. In that time she has recently been mad a dean at the college she works at. Her brain still works. So we need to change our expectations and learn new skills. She is motivation for me.

I hope you can manage working out something that will work better for you. These treatments are not aspirin and unfortunately do not give hourly results.

Good Luck!

 

[TheresaG]

Just last week my neuro that does clinical trials said they are currently doing one for vyvgart. Check the NIH and see if one near you.

[TheresaG]

Jennifer, the more I read this, the more I wonder anaphylactic shock. If each time you receive the infusion, it gets worse, that sounds like an allergic reaction. Have you discussed with neuro?

You any want to call Argenx direct if your dr. Has not solution.

It’s typical for allergic reactions to get worse with each exposure.

Hope not for your sake, fortunate, we have other new ones that work the same way.

[TheresaG]

Ive been on it for 2 years, initially I noticed bloating, and had the nurse only dilute in the larger ml bag of sodium chloride, larger than 50 ml, but i dont currently have one for exact ml, i think 75 or 100. It’s salt you know? She removes the amount needed for the vyvgart then that is all we use except the flush and only uses 5-7 ml of the 10 ml plunger for that. This cuts the sodium by more than half. Makes a huge difference for me. Talk to you neuro and see if okay.

Then be sure to hydrate really well 2 days b4 and a day after, water.

This made a big difference form me. Are your kidneys in good shape?

Nurse say anything?

Good luck hope you find a solution as it is the miracle drug for me.

I was just approved to go 4 weeks on then start again on the 2nd week after. I was crashing really bad and thinks this will really resolve that.

Are you certain it is not an anaphylactic reaction? No bumps, breathing g issues?

[TheresaG]

I agree with your neurologist.

My very first symptoms were just that, get up in morning, take shower, go back to bed. I too was told I had chronic fatigue syndrome.

I wonder if once you get on a steady medication of the VyVgart and others you may be taking, you get right again. Even vyvgart can take time to get in your system to work magic, and I find that it is not always consistent.

Good luck.

[TheresaG]

As you decrease the prednisone your symptoms are going to rebound. I had to reduce from 13 mg to 7 mg and it took a year to not experience symptoms aka fatigue. Try going slower. I actually can take an extra 5 mg every once in awhile when symptoms are bad without the nasty side effects.

It is a true balance.

[TheresaG]

Those of you taking the ER mestinon, are the gastric side effects as bad?

[TheresaG]

Fatigue is one of the great (not) symptoms of MG.

I find that I must take a nap most every day . 1.5 hours is my magic number. Then it’s like starting the day over. Drink my caffeine to awaken then get on with the second half of the day. Mornings are still the best. I also try to only make plans to be active every other day. This has been going on for 10 years . Does not change much. Every once in a while I’ll get a 3-5 day, I’m normal period. Few and seldom. I’m on vyvgart, prednisone and mestinon.

They’re not a cure just a help. Before any of these, I would sleep all day. With many more side effects.

[TheresaG]

Hi-

Curious how low was your IGG?

Mine runs low 300 on vyvgart. Never associated fatigue with it, though I definitely get it.

Thank you.

[TheresaG]

I’ve had back surgery and neck surgery long b4 MG dx. So the bad back existed.

That said, I continue with pain, most likely when I am MG exhausted. The weak shoulders put strain on neck, when I drive more than 2 hours have to wear a brace, prevents migraine.

My L5-SI is bone on bone, again when leg are weak, my back is not supported and I’m in bad pain.

Remember we are a fully connected structure, only makes sense.

[TheresaG]

I’m currently on vyvgart. I have a decent though not perfect response.

I would be inclined to ask for this except for the meningitis risk. That just scares me.

Have any of you tried rysstiggo? Same risk.

[TheresaG]

For any seronegative patients here, there is an MGFA seronegative group.

The next meeting will be on 11/18/23 via ZOOM.

You can register at [email protected] to receive further updates.

Hope to see you there.

[TheresaG]

I’ve been on vyvgart 2 years, the traditional dosing, 4 weeks on, 3-4 off. I was having huge high lows. My neuro got me approved for 4 on 1 off, 4 on 1 off, etc.

I’ve experienced extreme fatigue on both dosings. Of course I did before any treatment as well.

I’m wondering if the lowered IGG causes more fatigue. ???

I’m also now trying to reduce my 7 mg prednisone further, so of course the rebound causes fatigue,

I’m so tired of being tired! I literally could sleep all day. This is jot who I was at all.

If you discover any fatigue fighting thing, let me know please.

[TheresaG]

Frank, any particular diet you follow? Or just general anti inflammatory foods?

I know I need to give up sugar, but it’s my weakness.

[TheresaG]

You might talking to your doctor. It can take a while for the body to adjust to mestinon. Try taking with food. I need to sometimes take 1, then 1/2 the next dose, etc. spread it out, skip one and so on. I started on 2 then built up to 4-5/day. Good luck. I also will sometimes take immodium.

[TheresaG]

If you have not done so, do look at MGFA website at myasthenia.org.

You will learn much there along with many support groups.

As to the back. I’ve have back and neck surgery, granted bulging discs, however am convinced the muscle weakness caused by mg definitely contributes to my back, neck and shoulder pain. When I am at my best with my Vyvgart infusions, that pain goes away, only to return on my 3 weeks off Vyvgart.

[TheresaG]

HYSTERICAL

I’m always writing things that make no sense. Nothing like that however!

[TheresaG]

Sorry thought your post indicated you could not get a dx.

[TheresaG]

YES!

Not happy about it.

I’ve gained 10 pounds in 18 months on vyvgart.

This can’t continue. I had already put 15 on with prednisone.

I do have a sweet tooth, but always have so does not make sense!

[TheresaG]

If I were you, I would tell your neuro, that at 72, you don’t have time for a bunch of trial and error treatments. It us exactly what I told mine after 10 years no dx, and at 68, I really did not want other treatments and was waiting for vyvgart to be approved. I did 5 months IVIG, which made me sicker. Symptoms very similar to yours .

If he believes you have SNMG, then why not,and if he does not, then find a new neurologist who does.

I think sometimes if your insurance might cause extra work or a hiccup they don’t want to fight. But if he did trials, then ge should get it. Ask him what you need to do to get it. Partner up with him.

If there is not a contraindication for your other illnesses then I would fight for it.

Good luck.

[TheresaG]

Joanne

I too initially had positive effects from IVIG, then 3 months later it just made me sick. I quit and went on Vyvgart.

I have Medicare AB and Humana pard D who approved the vyvgart, then what they don’t cover is done so by The Assistance Fund. Check and see if there are still available positions there. It is a godsend both vyvgart and the assistance fund.

I’m 70 and at this stage don’t have time to play around with treatments that don’t work well. I also still take 7 mg prednisone and 300 mg of mestinon a day.

Talk to your neurologist and see if he can get you something better than IVIG.

[TheresaG]

Your RA is autoimmune so in my head a drug designed for that could be good for MG. I have to wonder if this is how they learn to use certain drugs off label .

I am sure vyvgart, which I take, and am seronegative , and so many others are being developed for many autoimmune diseases. Rituxin originally was for lupus or Ra?, and is used for many off label.

Keep reporting your findings, possibly to the manufacturer if it continues.

With vyvgart I’ve had 16 days one 10 one 6 Of total remission eyes included. Usually my eyes are unaffected. This infusion Monday my eyes are 70% good. Sure makes it hard to keep eyeglasses up to date. 🤦‍♀️

[TheresaG]

I am on my 10th cycle. 2 UTI’s, like you water intake seems to help. No way can I abstain from sugar. I suppose it would be wise, thanks for pointing out your success with doing so.

[TheresaG]

How long on vyvgart? Assume it was last Med added?

I’m in vyvgart for 18 mos. 7 mg prednisone and 240-300 mg pyridostigmine.

In my first 6 months on vyvgart, I too changed eyeglasses several times. My vision has progressively gotten worse, then better, seems to be related to where I am in my cycles.