[TheresaG]

As we know, we are all different. I began VyVgart infusions 3 years ago, I went 1.5 yrs suffering those 3 down weeks. So went to 4 on, 1 off. Did this maybe 8-9 months, then I still was losing the crash on day 10, and needing 2 infusions to get back to baseline. In reality, benefited 3 out of 6 weeks. 2 months ago, I began every other week. It has been amazing! I have quite a tract record, but somewhere in there I think they realized many of us were suffering. My dr/ per this weeks meeting is going to try me on self injection hytrulo. I fear, it will be not absorbed as well as infusion, but we shall see.

[TheresaG]

It is quite strange. I have had 5 broken metatarsals since 2022. 2 in 22, 1 in23, and 2 in 24. During this period and even before, I had swollen ankles and lower legs. That said, I had 2 venous insufficiency test, ones was ambiguous, the other showed perfect flow. These breaks have subsequently healed. The swelling is mostly gone just a tad puffy on the outer by ankle bone. I think prednisone plays a part. And yes an old injury, which in too have, seem to exasperate the situation. We also spend more time sitting than when we were healthy. I did PT where the therapist would massage the swelling out of my foot/ankle into the leg, did taping, these things definitely played a part in my healing. Now the ankles only swell if I am having a great week and on my feet a bunch. Don’t know if that helps, but you are not alone. It definitely makes one crazy trying to figured out “okay now what is wrong”!!!! Good Luck.

[TheresaG]

I just want to input how mine went. I became symptomatic in 2013. In 2024 I had a 4 foot resection of small intestine due to another rare cancer. Carcinoid, aka Neuroendocrine cancer.

When I healed from the surgery 4-6 weeks later MG became my new friend. Hit me like a ton of bricks. Up at 8, take shower, back in bed by 11. Absolutely no strength. No appetite, and like you describe, could not swallow and eat. I lived on baked potato, soup, ice cream, protein drinks, steamed carrots.

Of course I and all the doctors in So. Ca. Thought it was due to recurrence of cancer. I literally ran from one doctor to anther at all major medical centers. Multiple cardiologists, pulmonologists, endocrinologist, rheumatologists, neurologist, gastroenterologists, neuro opthamologist, even had one cardio put me into rehab due to the shortness of breath. OMG. I finally ended up at UCLA where a doctor that treated me for my cancer follow up scans sent me to their rheumatologist. By 2017 I was ready to try anything. I had to retire from my own business, so was pretty upset. Anyway, after a bout with my back took a prednisone pack. OMG, I could walk, talk and function, some. The rheumatologist upon my pleading put me on 5 mg prednisone. Told him I’ll tak a little life than in bed forever. Fast forward to 2020. I saw a neuro who did the SFEMG, put me on 20 mg prednisone and mestinon, to which I responded well. I then moved to Arizona and saw a Dr. Muley. We did IVIG first and now have been on vyvgart for 2.5 years. Moral of the story is when the disease is managed well, things like gastroparesis and SIBO, which i was dx’d for both in my search, will dissipate. I lost 35 pounds early on. I was actually anemic, BMI 19.5. Today thanks to prednisone I have a BMI of 25.5.

Find a good doctor who will get you the needed treatment and life can be better. Not perfect, and I have bad days, but I feel good 70-80% of the time.

Sorry for the rabbit hole. Hope it helps someone.

 

[TheresaG]

Those of us that have been on it for long term have the problem because our body stops producing cortisol. Your dr has the dose reduction in a short period of time so likely fine. The hope is to throw the meds at it and shock it out of you. I wish I had had a wise neuro like that instead just putting me on it for years. Good luck.

[TheresaG]

Ive been on prednisone since 2018. Highest dose 20 mg, then down to 10 then have been at 7, 6.5,6. Trying to stabalize at 6.

I currently have 2 fractured metatarsals, 2023 had 1, 2022 had 2. OMG they are so very painful. I must get off. Ironically my bone density test is good, very good.

Have any of you had treatment for osteoporosis and had positive rebuilding results? Did you take pills or injections?

I hope it can be reversed!

[TheresaG]

For the last 3 cycles I am receiving 4 weeks on, 2 weeks off. They refer to it as a 32 day circle. Its been great. While remission is not a possibility with vyvgart, (need it in your system) , it’s as near to feeling pre MG as ive been in 10 years. Im seronegative.

Im also weaning off 5 mg prednisone and 4-5×60 mg. Mestinon.

It seems many cannot go the full 3 weeks post 4th infusion. For me, I crashed at 2 weeks, until next cycle. So by the time I started again it would take 3 infusions too get back to baseline. So in reality I would only get 3 good / decent weeks in a 51 day cycle .

 

[TheresaG]

That sounds like a good option. My neuro increased my VYVgart infusion cycle to 4 on 2 off.

It was amazing. I’m in process of regaining as my deliveries got all messed up. That said, I’ve been weaning off prednisone. Currently at 5mg.

In the past 4 years I’ve had 4 broken toes ( metatarsals) spent months in foot boots.

My bone density is great but the prednisone is causing pitting in the extremities.

Point being the med causes many problems inside where we can’t see.

I get many broken blood vessels on arms etc. imagine what might be happening internally. While a miracle drug and probably fine short term I think critical to get off of it.

To the original poster. Are you in any other med, I.e. vyvgart? If not it would assist to get off prednisone. Just go very slow. My experience is it takes easily a year for stabilization.

[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]

I too take the modafinil, it has been a godsend. I have severe fatigue, I started on 100 mg, now at 250 mg. After 6 months.

I am only able to periodically take pyridostigmine. Gastric issues way too much. Also on 6.5 mg prednisone and vyvgart.

[TheresaG]

Fatigue used to be my main issue. On a blog someone mentioned using modafinil. I looked it up. It is prescribed for narcolepsy and truck drivers, people who work midnight shifts etc. my doctor agreed to let me try it. Well it has been nothing short of a miracle for me. Initially took 100 mg in the morning. But that only took me to late afternoon. So now I take 100mg in the morning, then at noon I break one in half, then take another half at 3. Most days I make it to bedtime sometimes just needing to rest my eyes and legs for 20 minutes in afternoon. It is a controlled drug, brand name Provigil. The worst side effects I experience is being able to now sleep soundly at night. I am 71. I also take vyvgart, prednisone and mestinon. I have some weeks I feel like I am 50. Then I overdo and it takes me a few days to recover. It seems it is always a balancing act, but I am better than I was we years ago. Dx’d in 2020, symptoms began in 2013. It is definitely a life changing disease but being proactive one can manage it. Happy new year all.

[TheresaG]

Eric in regards to treatments/insurance. While there are no openings now, you can get in the wait list at “THE ASSISTANCE FUND”. When approved they pick up copays etc for our expensive meds. Good luck. We always have to fear the disapproval every mew year of al the supports we get for our medication. Thank God there is support out there. There are other supports you can receive as well. I hope you get your coverage. Oh also have your doctor, infusion company help.

[TheresaG]

Have you tried new meds like vyvgart?”

[TheresaG]

Any chance the prednisone caused the reason for ankle fusion?

I ask as im having ankle stability issues.

[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!