[TheresaG]

I am seronegative.

‘Wednesday I received my second infusion. Sadly I have not experienced any improvement yet. The vyvgart nurse told me for some it has taken 2 or even 3 cycles of 4 infusions  to have a change.

As we seronegative are always in question as to the diagnosis, it makes me continue to question it.

Gary, did you notice an improvement the same day of infusion?
was there improvement day to day after each infusion?

I continue to look each day for a change! Maybe today. Just had 2 bad days, maybe today is my day!

[TheresaG]

I definitely have a lot of pain.

I previously had back surgery which caused permanent nerve damage/pain, subsequently put on pain management/meds.

the overuse of muscles cause pain everywhere else. I cannot imagine how bad it would be as my pain meds for the back do not cover the other pain.

I try to describe to my husband the pain, it feels like it comes out from the bone through the muscle along with the weakness.

Anyone else feel the pain like that?

lower legs, back, neck, shoulders. UGH! That time of day now!

[TheresaG]

Sheila

I’m sure each insurance has its own protocol.
I would ask your doctor to prescribe it and see if you get coverage. Also contact Vyvgart yourself and ask how to get it. You can log into their site and it will tell you who to call.  There is also grants through them to cover copay up to $25,000. I believe.
you are antibody positive so you qualify.
seronegative do not. I start in 10 days it took some work and not accepting the first denial to get it approved.
I got lucky.
Vyvgart definitely wants to get it to everyone and are very happy to help.

[TheresaG]

Norm,

at 68 I am always analyzing the aging process in my symptoms.

however my first symptoms began about 10 years ago with ocular, progressing to swallowing and upper body fatigue, combined with shortness of breath , full on fatigue where I could barely stand up and had to go sleep.

we are certainly all different , and depending on what meds you may be on.

It is my ideal to see a couple specialists, belong to sites like this, and read and get as educated as you can in your disease.

ask yourself if after you sleep in the morning, are your other symptoms better? If you take a nap, are they temporarily relieved?

I find doctors can have varying opinions on disease. Do they only treat MG? I had a cancer in 2013/14 a rare one and I was misdiagnosed by a dr. With great credential at a university.

even after diagnosed, going down a learning curve like this one to find many “specialists “ in my cancer had very different opinions as to treatment and if in fact my cancer was ongoing or in remission.

that said, even with MG you will gain different opinions so you must do as we are doing here and learn as much as you can.

my swallowing was eliminated with 5 mg of prednisone.
my SOB relieved with IVIG.

another thing I do is to compare myself against my friends nor my age to see how tired are they and what can they do?

I think the fatigue that comes with MG is so overwhelming it is not just “tired” where others cannot even relate. At least for me it is.

i hope that helps for you to identify if your symptoms are MG air aging.

my husband is 72, and maybe 2.0 times a week will “nap” but he keeps quite busy and a 2.0 minute nap is not uncommon for anyone this age. But if he can’t take a nap, no problem, when I need a nap, it is a problem, I must sleep.

based upon what you say, it sounds like MG symptoms. That overwhelming needing a sleep.

good luck.

 

[TheresaG]

Barbara, good luck. I literally find myself dancing with the dosing daily.

i think metabolism, diet, sleep, disease all influences it on a daily basis.

so go with what works, right?

 

[TheresaG]

Barbara,

this happens to me exactly uf I’ve taken a dose in the evening, other times as well but definitely under the covers.
I’ll jump out of bed in pain and weight strain the toes to make it stop.

i am able to reduce side effects by halving the pill. I think it probably due to too much or not enough fluids or magnesium or potassium in body MY theory is it just reacts differently different says.

If I cut back from 4/60mg to 3 for a day it quickly straightens out. Then I resume the next day to 4. Or I take 1/2 pill instead of a whole pill at 1 dose.

we all process meds at a different rate, so following their exact written dose affects us each different. There is a lot of flexibility in this Med as it is pretty harmless and a very short half life. Diarrhea and cramps being the main side effects. Both short lived.

i just find my playing back and forth.with dosage I can keep it mostly in check.

Podiatrist likely will be clueless and look up the wrong tree.

I would speak to Neuro first if you cant manage it with playing with dosing.

According to my docs, it is not needed to be used exactly as prescribed. It’s more what works for you.

good luck!

 

[TheresaG]

Joe,

I am guessing you are not seronegative, correct?

I hope you get the remarkable positive results they tout.

I’ve heard first or second infusion gets positive results.

keep us appraised please.

Good Luck.

[TheresaG]

Or perhaps a class action law suit.
many attorneys out there?

may have to do each insurance company starting with Medicare for off label use. ?

[TheresaG]

Ron-

Seronegative is those of us about 10% who do not test positive to the Achr, MUSK orLRP4 antibodies. So we are diagnosed by single fiber EMG usually and or symptoms relieved by treatment I.e., prednisone, mestinon etc.

See below.

https://www.medscape.com/answers/1171206-92611/what-is-seronegative-myasthenia-gravis-mg

[TheresaG]

Barbara thanks for the positive post.

love the stay there chair innuendo!

[TheresaG]

Amy,

thanks for that input.

it is not easy for sure!

[TheresaG]

Don’t feel dumb…ever.

this site truly is not terribly easy to navigate.

if you would like to call me I would be happy to walk you through it. Feel free to message me.

 

[TheresaG]

Norm, not sure which conversation you are referring to on antibodies. But the MG antibodies are indicative of a neurological disease where the antibody affects the nerve communication to the muscle. Layman’s description.

I am seronegative, I do not present with the ACHR, MUSK or the 3rd one. Either they have not discovered the others that cause it, or the tests are not sensitive enough to detect it. OR, it is a muscle myopathy.

They can present very similar, but if you are antibody positive, then you are for sure  MG and it is affecting the nerve muscle communication.

If you did not watch, there  is tons of info on the MGFA conference held last week that may answer your question more deeply.

 

[TheresaG]

In the upper right corner click on your profile.

then click messages.

put my name in and it will come to me only.

if you have difficulty just dm me.

 

[TheresaG]

Tim….so true. We are on the tip of the iceberg in seeing how this Covid will long term impact society.

[TheresaG]

Tim, if a doctor has not told you that, I’d pretty much bet on it.

I believe mine was unleashed due to a MRSA infection a couple years prior, wad put on vancomycin pump…OR… my body fighting my cancer in the early days plus all the antibiotics and anesthesia used in surgery.

trauma as in surgery, or other trauma can cause that autoimmune disease to the forefront.

I gave a family history of autoimmune diseases. Wonder how many others of you out there do. If you don’t actively know, might want to ask immediate family.
also don’t ge surprised if you suddenly develop another. Quite common to experience more than one. Not just MG but autoimmune in general.

My daughter has had Lupus for 27 years, along with others that developed over time.

 

[TheresaG]

We already are hearing of our  MG community experiencing exacerbated symptoms and or new diagnosis after having the vaccine or the Covid.

Our antibodies are being activated and IF you have an autoimmune predisposition, it makes sense some will overreact which  what happens in autoimmune disease and attacks  the body and unleash an autoimmune disease.

Just my untrained opinion.

[TheresaG]

Nan,

I have the option to go on vyvgart whenever I’m ready.

i speak to neuro again Monday.

I figure nothing to lose but 4 weeks.
im on Medicare and a BCBS supplement and he is confident he can push it through . It is Barrow’s institute so they have the systems and staff to make this sort of thing happen. I’ve had many occasions over the years where one doctors office could make a treatment happen when another could not. Not necessarily MG. Even getting IVIG is off label for seronegative.
so it can be done.

[TheresaG]

Amy, right on! Me too.

Cyndi and I are working to get that zoom group put together.

I think you sent her your email?

feel free to pm me.

[TheresaG]

Julie,

Cyndi DeHoff and I are working to get the group together. If any of you have not already done so and are interested please PM Cyndi or I your emails so we can connect. Hopefully we can get this together by next week and send out emails.

Your story is interesting to me. Mine started about 2012 near as I can put a finger in it. Visually issues. Neuro opthamologist ran achr and musk. Negative. Then a bout with Neuroendocrine cancer 2014. After my surgery I’m guessing the drugs and or trauma released full in MG. More blood tests, went to UCLA to a rheumatologist there. They and UVi ran every antibody know in 2015 all negative except for positive ANA 1:1280 amc centromere antibody. After an accidental discovery that I took prednisone and felt much better they first out me on 10 mg, we weaned back to as low as I felt better on and it was settled in 5 mg. All the while with caution with the concern of scleroderma which pred is contraindicated for. They dismissed me with undifferentiated connective tissue disease. Pretty sure that’s what they call, “ we have no idea disease”.

my daughter was dx’d with it 25 years ago, she began with bilateral drop foot at 27. The. After not positive antibodies she finally had a positive ANA after 5 years at the end of her pregnancy. Dx’d with lupus. It got quite severe and she did a clinical trial which was not put forth fda> 2 years later she was given rituximab which out her lupus in remission. Her muscle problem has moved to her upper body and respiratory. Very severe. She is headed to Mayo in March to investigate further. She actually has never been given SFEMG which astonishes me.
my father was told he had ALS. I now believe he had MG based upon his health path. Now deceased so too,late fo find out.

sister had chrohns, RA. So yes un answer to your question as autoimmune runs in families we’ve been hit hard.

i really believe this connection can serve us seronegative well to compare and perhaps take our similarities to the researchers.
Interesting that so far it is all females that have responded.

are there any seronegative males out there?

[TheresaG]

Amy, cruises make for good retirement journeys with MG.

it definitely put a damper on the “golden” years.
but is is what we make of it.
`

[TheresaG]

Today is a different day with the medical field, it is so immense and so specialized, and as they say they are “practicing” medicine. I’ve always remembered that phrase. It helps to keep perspective and for me to know I have to advocate for myself. No one walks in your shoes except you.
good luck in this journey.

[TheresaG]

Maureen,

sounds like upper arm fatigue, do you get SOB as well? I get like that then collapse as well. Sleep revives.
I wonder if the cold air in your lungs could also impact what happened.
I always look for the answers.
take care! Stay warm.

[TheresaG]

I’ve not heard stabilization by the doctors.
we are each so unique, my neuro does not assure me of anything. It’s like I am my own Guinea pig and will respond or not to each treatment.