TheresaG

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]

Sorry, reduction of prednisone, causes bothe it’s own side effects, but also can cause flaringnof the autoimmune disease for which you are taking.

so yes, my eyelid has been real droopy with .5 reduction in spite of the VyVgart benefits.
I want off the prednisone so I have to keep that in my mind that it is quite possibly the steroid reduction a…[Read more]

I completed my 4th infusion of vyvgart last week.

about half way into the 2nd infusion, I began noticing subtle things. Less naps, forgetting mestinon.

Then 3rd and 4th infusion, those and other “subtle” changes.

after the 4th, the next day was a big improvement. Not like ready for a marathon, but gradual daily improvements. Much like the sno…[Read more]

Amy was your aunts story intended for me?

absolutely seronegative is a slippery slope as there is no concrete way to assure it is the correct diagnosis. I have been hesitant in doing many if the drugs.

so far prednisone, which I took prior to dx due to discovering it gave me a little QOL, 5 mg, maxed out at 20 thus last year, back down to…[Read more]

Neil,

I love your pie / quiche theory.

I’m sure  we can all relate!

I am a native Californian and still go back and my niece lives in Cathedral City.

im curious if you would share who your doctor is there. I go back to UCLA, OC for various doctors.

i have a good one in Phoenix but it never hurts to have someone in your back pocket.

I hope yo…[Read more]

Mark,

I’m curious if your are hydrating properly before infusions of any type but especially IVIG.

my nurses had me drink 50% of my body weight in water ounces for 48-72 hours before my I fusions and 48 hours after. I seldom had headache as a result, only mild and that was after 5 months of infusions, 2 days, twice a month. I became sensitive t…[Read more]

Gary, mine was 9. So perhaps it makes sense your response is stronger than mine.
Hope todays infusion gives me more strength.

i do feel decent, not like I hope for, but maybe patience needs to be my new goal. 🙂

Paula, also weaning off prednisone is very tricky and can cause significant symptoms, known as rebound effect.
muscle aches, nausea, fever, headache all kinds of stuff including MG symptom return.

you must go slowly.

for me, I was in 20 mg in November, I am now at 8. As you can tell I’ve dropped very slowly as the doctor initially said to drop 5…[Read more]

Paula,

As with IVIG, it is best if you hydrate super well, half your body weight in oz, 24 hours prior.

I have had no side effects.

how long was the actual needle in the arm and out infusion?

it should run about an hour, at least mine does and they use 2 vials of vyvgart for my weight. That would impact the time.

did you get connected with…[Read more]

Perhaps it is the tortoise, not the hare race with this stuff.

and perhaps the degree of disease impact.

do you know your ADL score when you began the treatment?

Wish you the best Mark.
are you seronegative or positive?

im glad to see as many as there is getting it approved and started. It does seem to be the best thing that has come along in some time with minimal risks.

thus far I’ve had no negative reactions.

Thank you Nan.

im going to sway a bit from my last comment that it was not working. As we know our snowflake disease impacts each of us minute to minute, hour to hour.

Ont thing I’ve noticed of recent, my maps seem to be less in length. I. Able to get some restorative benefit from a 30-45 minute nap, previously 1-2 hours.

im sure this is why c…[Read more]

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?

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 bod…[Read more]

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 im…[Read more]