[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]

I’m glad this has been brought up for a couple reasons. I think it good we all learn that few of us are ever relieved of all symptoms. That would be remission. Lucky those that get it.’

I too am on vyvgart. Cycle 11. My eyes, double blurred vision and droopy eyelid never stop. My neuro shared many have this issue. I did have 10 days a couple months ago where all my symptoms were gone. It was amazing. Not since. In fact I don’t seem as good on treatments today as I did at 6,7,8 months. I also am on 7 mg prednisone and mestinon. I really have to support with the mestinon. The weakness has been real bad recently. I also wonder those of you on Vyvgart and other treatments. Does it seem to you that your symptoms vary ? I feel like they rotate and one day/week/month maybe it’s bad weakness and fatigue, then others it is my breathing, then others it’s eyes. I was nearly blind in one eye for 5 days. It’s all so weird. They vacillate a lot. Just curious if others experience this?

I was offered Rysstigo but it has the possible side effect of meningitis which scares me. It apparently suppresses 80% of the antibody versus 60% with vyvgart.

Any of you have continued good results with vyvgart?

[TheresaG]

This is a very good and interesting topic.  It seems like it should be and I wonder if anyone has done a survey in how many families have it. Just look at the few here with stories.

mine comes with all un/mis diagnosed.

MY father was told he probably had ALS at 79. He suddenly became weak, could not use his fingers, then could jot swallow, could not talk. He was jot one to make the trip from AZ to UCLA to get a firm dx. Therefore he withered away, with no treatment of any kind and died at 81. He suffocated in his phlegm.

MY daughter has had bilateral drop foot since 27, now 53. Diagnosed with CIDP, and a host of many other autoimmune diseases. Most recently as she is now in a wheelchair, and losing function of both arms, one went first, second is 70% gone. She has some ptosis, and has been prescribed a Bi-Pap machine for sleeping. Has been on oxygen for high elevations. Currently her body is wasting away. She most recently has been down a rabbit hole after genetic testing where Neuro’s at Mayo, UCI all believe she has a muscular dystrophy disease, which of course they cannot concretely confirm.

I first had occular symptoms and weakness, fatigue in 2012. I was finally diagnosed with Seronegative MG in 2020. I am fortunate to have connected with a great neuro who specializes in MG , is Seronegative friendly and am now on Vyvgart, 7 mg prednisone and 240 mg mestinon. I’m doing better at this point than either of my relatives did or are. Through ancestry.com we have identified a great, great aunt that was in a wheelchair from 50 yrs old on.

How likely is it the 3/4 relatives have a different muscle disease?

I don’t believe it. My daughter is convinced of the dystrophy but it seems to me that an MG patient could end up in a wheelchair, losing use of limbs if untreated.
appreciative of any input with any of your experiences.

 

[TheresaG]

I am now almost a year on Vyvgart, I am seronegative.

it has taken some adjustment to the normal dosing, but overall, I will say I am a lot getter today than a year ago.

I continue wit 7 mg prednisone and 4x60mg mestinon.

there are times I have some SOB, fatigue, weakness and the eye droop and double vision never goes away. The part of the cycle I have to wait 3 weeks is the worst but I get right back up when the infusions begin again.

‘Always remembering, this is not a cure, but a treatment and so it has its ups and downs as well.
it is a great treatment for me. I am in the habit of being cautious on schedule and commitments but that is okay, I still do more than many my age.

[TheresaG]

Barry, the thought I have relative to prednisone.
For me it gas taken a year to go from 20mg to 7.
Each 1/2-1 mg drop causes a rebound effect of varying symptoms. It will take me 4-6 weeks to actually stabalize and drop 1 mg. Point being you can get the rebound but as your body adjusts to the drop it levels back out. Very hard and frustrating. The drug stays in your tissues for various lengths of time.
Long term it is a nasty drug that can cause lots of other issues. They say a 5 mg a day dose is fairly benign. I just failed going from 7-6. It has been said to me that the eyes are the most distant muscles so most susceptible to the decrease and increase.
Hope the info might be helpful. I will try to drop more when things are more stable in my life. I don’t like the negative prednisone effects.

[TheresaG]

I’m seronegative, SOB mostly on excertion, except when real bad. At end of day the SOB will increase as ALL the muscles fatigue out. Prior to dx, I saw multiple cardiologists and pulmonologists, and they all scratched their head as all my tests were great. Kinda good to know. Now that I am on a good treatment regimen, vyvgart, 7 mg prednisone and mestinon 60 mg 4-5 times a day, I’m able to mostly manage even the SOB. Though we have weather change now and that will affect me. I also feel I need to wear loose clothing or otherwise the tightness makes breathing more uncomfortable. Much like one with COPD.
When I’m  fully exhausted, at the end of the day, needing treatment, And have pushed too far, I will collapse on the bed, SOB and it can take 20-45 minutes for my breathing to become normal again.

we’re all a little different but it’s helpful to see the commonalities.

[TheresaG]

No, I would not.

But I am one that prioritizes food and medical as a financial priority.
I do believe we are all headed to less than desires options and mandates as it relates to medical care.

I just experienced my primary requiring us to sign a form making him our Medicare primary physician which has an alliance with a company that is doing a government allowed trial to “supposedly” make our care more efficient. Somehow I just don’t believe it.
I am highly suspicious of these kinds of changes.

It is quite scary how Amazon has taken over so much and become so huge. I appreciate the shopping convenience but let’s face it, they have put many businesses out of business and one day it will come back to haunt us as they will have eaten up all the competition.

so no, I think they should not get in medical business.
just remember if it sounds too good to be true, it will be.
BUYER BEWARE.
I have nothing to base this on except my gut feeling. They control enough!

[TheresaG]

Lisa-

I’ve never experienced this. My input would also be they have no right to direct who your practitioner you see is.

Does your PPO have a patient advocate you can contact to assist you in this?

there does come a point where the stress caused by things like this make it easier to just go elsewhere if that is an option. No point in paying for that which you do not want.

Though when I’m feeling really strong I want to fight the system to get what I need/want.

I hope you are able to get resolution to get the best you can get.

[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]

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.

[TheresaG]

Ann Marie, I’ve visited the site for a vest numerous times. Curious which kind you use. They seem like they would be cumbersome? Please share?

thanks much

[TheresaG]

I too stumbled upon the lymphatic massage after doing some reading. I have consistent joint pain, back, neck, hips, knees etc. as I had a small intestine resection 10 years ago due to cancer and I think 16 lymph nodes were removed it made sense to me that better lymph flow might improve the lower leg swelling etc. well it certainly does. But like most things, we feel better and discontinue doing it. So need to make it a regular routine. Only takes 10 minutes.  Then I do stretching. It really helps to get the more going. Of course if you are in pain you don’t feel like doing it. It is definitely catch 22.
a lymphatic massage would be great.

[TheresaG]

Carlos-

I have been on vyvgart for a year now. I too found the hard way I cannot go more than 15 days post 4th infusion without crashing. I also find that each infusion/cycle produces a different response. Just has 4/8 yesterday and I feel like all I want to do is sleep and leg muscles super weak. I’m hoping tomorrow brings a new me as it has in the past. Being 69 and with chronic neck and back problems it’s always hard to identify the cause.

‘For those asking about side effects-

ive had 2 UTI’s in a year, and just the fatigue after some infusions. I began taking cranberry pills and none since.

as with all of these meds, stay hydrated.When I compare to a year ago it is a huge improvement. If I overdo I still suffer, just not as much. I gave not seen any literature about cancer. I would go to the Argenx website, contact them and ask directly. I had cancer in 2014 which is why I was unwilling to take cellcept.

 

[TheresaG]

I can only say it has been a life changer for me.
If you  are able to get it, often not easy due to insurance, it is worth the try.

‘do be forewarned, it may nit be an immediate gratification. It took me 3-4 infusions for a major impact. Then the following cycles for me needed to be the 50 days post 1st I fusion of last cycle.

you might have to give it a couple cycles, remember they are learning what works in the real world in the dosing.

im working toward every other week once the baseline has been achieved which I hope to be this one, cycle 5.

Good luck.

[TheresaG]

Brad-

I am seronegative, that said prior to dx, after numerous  negative antibody test, was sent to a surgeon as you were. I was a weekend from obtaining the surgery, when a gf asked me if it would alter any cosmetic issues on my eyes. I did not know so emailed the dr. And he said, possibly could but could be repaired by a cosmetic surgeon. I cancelled the surgery, so glad I did as I was dx’d that fall.

im glad the prednisone is working for you, it did me too. But just be careful, my symptoms, cortisol, weight gain, thin skin, emotional angst, etc prednisone issues began after 2-3 years on prednisone. Wham. I was never higher than 20 mg/day. Am now down to 7/day and in VyVgart, and Mestinon.

Prednisone is great, sadly it is a devil as well.

[TheresaG]

Sounds pretty familiar. Found the phlegm stuck around awhile but never super bad.

is the mucinex not the D version which is contraindicated?

hope it passes quickly for you. My fever was 4 days after positive test.

[TheresaG]

Had it in April.

sore throat on a Wednesday, tested positive Friday, very fatigued for about 5 days. On Sunday had a 100.4 fever, for half day.

drank lots of fluids, OJ, ate chicken soup, lost 5 pounds, just laid low for 5-7 days. Took 12 days to test negative. Had about two weeks after where I had mild chest congestion phlegm. I did ret an antibiotic so it would not turn to pneumonia or anything.

you’re still in the time you can get Paxlovid, people I know who took it git rid of symptoms in 2 days.

Good luck.
For me I’ve had worse flu’s. I am totally vaccinated.

[TheresaG]

Mark we seem to concur on our experience using mestinon and prednisone with VyVgart.

im down to 7 mg, slow go, but neuro figures I’ll remain on 5 mg which is a dose that supposedly does not damage the body.
cycle 3 infusion 3 Friday. Live it.

and for anyone reading. I’ve been told, we all will differ as any treatment and it does not cure, it improves.

My QOL test has gone from 11/13 to 3.5/5 my days still vary and I can still  burn myself out and need  a day to chill and perhaps nap. But I’m in retirement so that is fair, right?