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…[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]

My husband and I, I’m the seronegative mg , both just went through Covid.

we had a week long mild case, highly attributed to having both vaccines and a booster.
had we not, it is most likely we, especially me, could very likely have ended up in the hospital.

It is due to fear, that we did not get the second booster. There are no guarantees in t…[Read more]

Sawyer, are you seeing a neuromuscular specialist that specializes in MG.
First the dose you are taking if mestinon is quite low.
Bear in mind you can play with this Med to make it work for you.
It can be 30 mg one dose and perhaps every other 60 mg.
It is essentially out of your system in 4 hours so you want to make sure you take it during…[Read more]

We all need knowledgeable proactive neuro’s.

Keep in mind cellcept can take I think up to a year to be effective.
I have not been on it but ithers here that San attest to how long.

Hey Sawyer, sorry to hear you are on Kaiser!
It makes your care a bit more difficult but it can be done.
Take your requests to your current neuro, ask if they will help you to get more current care, do your homework and take documentation showing how the newer treatments are more affective and less hard in the body. You are only 23. Long…[Read more]

Be sure to look up quinine affects for MG.
It is actually contraindicated.
I googled quinine and myasthenia Gravis and there is a lot of information contraindicating it.
FYI

Again we are all different but I would use caution.

Mike just reread your comment.

i was reminded yesterday by a veteran MGer, she said to remember our eyelids have the smallest of nerves to control them and they are the most outlying. So it is natural they would respond Accordingly.

I have to jow drop .25-.5 mg every 3-4 weeks so my symptoms are not too profound. I find after 3-4 weeks they…[Read more]