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,…[Read more]

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 i…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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 a…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.

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…[Read more]

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 imp…[Read more]

Edward as I just posted to Claire. Instructions note you are eligible for your next infusion 52, perhaps 55 days post the first infusion dat of the previous cycle.

if you calculate that is every other month roughly.

if your medical team says you have to wait 8 weeks after your last infusion, call them as soon as your improvement starts to…[Read more]

Claire-

if you review the trials, most patients continue with some co treatments. Generally prednisone and mestinon.

Depending on your symptoms, reductions should be done slowly when and if needed.

i still and likely plan to use Mestinon as a supplement for ocular symptoms for a long time as that is the one thing VyVgart is last to help.
Im…[Read more]

Jessica,

if you are referring to me as being positive, I am not.
I am without a doubt Seronegative.

the FDA in only approved it for ACHR positive patients so the Seronega would not sku the results making it available for no one.

as a Seronegative, my doctor and infusion company were both instrumental in obtaining VYVgart for me. Not an easy…[Read more]

I had the Omicron version, hit with a sore throat, loss of taste, mild headache, 1 day fever 100.4, no appetite, lots of fatigue, congestion in chest,  no appetite, YAY,  only plus as I’m still on prednisone so lost 3 pounds.

most symptoms disappeared after 8-9 days except clearing chest congestion took about 14 days. All in all felt like a col…[Read more]

I ours like to let everyone who is seronegative know there is a seronegative FB page that is very informative.

Also please look at MGFA site for info under groups to find there is a seronegative group forming there.

https://myasthenia.org/Events/mgfa-national-patient-conference-2022

If anyone wants to reach out to me, you can dm me. If I…[Read more]

Prednisone is one if the first line treatments for MG.

it also is know to sometimes exacerbate symptoms. Generally temporary.

IVIG caused negative symptoms for me, and others.

anytime, anything we put something in our bodies it has the potential to cause a negative effect.

‘antivirals can exacerbate flu and or Covid symptoms.

it’s all abo…[Read more]

Barry,

IVIG was not a huge success for me long term. I developed side effects that outweighed any benefit.

i started VYVgart 2 months ago, which has been a game changer for me.
So simple, and it really made my life nearly normal until the dreaded Covid came and me on a 2 week hiatus after my second cycle began.

today I start again post…[Read more]