[TheresaG]

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 haul.
Sometimes giving them the ammunition is what it can take.
There are some facilities with great doctors, others not so great as everywhere but at the end of the day, they are in it for profits.
So you must be the knowledgeable patient.
If they won’t, don’t can’t do any more,
Ask if they should or could refer you to a neuromuscular MG specialist. Assuming they are not.
You also should look in the NIH for any trials going on in your area for the new proven drugs. That can get you in free.

Read your Kaiser rules.
There are situations where if they do Not have a neuromuscular specialist you file a formal request to see one to consult your case.
If you are not receiving the treatment appropriate for you, they must refer you out.
Are you in CA?
No or So?

I can’t type it all here but if you want to talk privately, friend me and I can give you some pointers.
Also look In here there are Kaiser people here that may be receiving appropriate care and you may be in the area where they have a good neuro.
Just some thoughts.
Theresa

[TheresaG]

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 snowflake description of our disease. Not every day the same but of course the more I do, a couple days later I might get pretty tired. Much different though.

note when you have had the disease for 10 years, we naturally schedule our time so this habits don’t disappear immediately.
I am convinced there is a significant improvement. If it had to out a number to it, I would say I am 70-75% better, maybe a little more. Hardly any SOB, few and shorter naps.
I can go all day, sometimes till 11 pm.

I’ve been told that it can take 2 or even 3 cycles before a patient might experience improvement. But it is real.
I hope this becomes available to all Seronegative patients. It’s worth the opportunity.

‘absolutely no side effects.

down to 7.5 mg prednisone.

i have to remember that reduction will cause MG like symptoms.

good luck to all.

[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]

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.

[TheresaG]

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 subside.

im at 7.5 mg right now. Down from 20 beginning in November.

it’s a slow haul. I have tons of side effects from them so want them gone. Just praying the VyVgart gets me there.

good luck!

[TheresaG]

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 and that the treatment is all good.
and overall it is.
daily I can see my activity level, fatigue, SOB symptoms are all better since that last infusion.
I am Seronegative so super excited it is working.

hope that clears up my explanation.

[TheresaG]

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 7.5.

IVIG for 4 months, pretty benign, and now vyvgart which no longer term affects are known but won’t be on it long to know if it works.
Thanks for input.

[TheresaG]

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 your Vyvgart treatment improves things for you.

I just completed my third. Jury is still out for me. I want it to be helping but I don’t want to think it is and it is not.
we will see.

best of luck to you.

‘do you find the desert heat makes your MG symptoms worse?

im in the mountains in AZ so much like CA mountains. Beautiful.

 

 

[TheresaG]

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 to it where I think was making my life worse.

‘additionally they would give me Benadryl and Tyler right prior to infusion.

I’m not sure of the timelines for your treatments but it does sound like a lot in a relative short period of time.

for many things it if not enough time is given for something to work or not long term you will never know for sure.

i also found if I took Benadryl for several days after that helped. Of course Tylenol I assume you take for headaches.

vyvgart they say the fluids are not as important prior but I still need to 24 hours prior or I have vein issues.

Do you have a Vyvgart nurse?

I was told by her that it can take up to 3 cycles for some to respond.

of course some never will.

Are you antibody positive?

if so, I would hang there for a few cycles to see if it works, it seems to be a great option.

also if no one has told you Solaris seems to be a good option for many. I think it might take a little longer for results, but this disease is a long haul, so it is best to choose what will get you that long haul treatment.

good luck!

 

[TheresaG]

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. 🙂

 

[TheresaG]

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 mg. Well I thought I died.

since, I’ve come down .5-1.0 mg every 2-4 weeks. Each drop I allow stabilization until I feel normal again.
it’s miserable. Sorry for the good news.

if you want to connect with me direct, I’ll share some information I found that really helped.

[TheresaG]

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 a Vyvgart nurse?

if jot, you might want to go to their website and connect direct with someone and explain your side effects. Or your doctor of course, however, also vyvgart as they will have the most experience to guide you.

[TheresaG]

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?

 

[TheresaG]

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.

[TheresaG]

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 clinical trials must be difficult. Subtle changes often not noticeable. I probably am looking for a magic huge curative change perhaps. Like prednisone, if we take a huge dose, magic happens. Perhaps for me this will be more gradual and baby steps.

I’m not one to give up, so I will take what I get.
when I don’t journal, I generally don’t because I’m doing things so i don’t have time.
the more I do, the more tired I get, so less time to journal.  Lol.

need to journal daily for this vyvgart test.
fingers crossed for improvement after tomorrow’s infusion.

#3.

[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!