[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, could not talk. He was jot one to make the trip from AZ to UCLA to get a firm dx. Therefore he withered away, with no treatment of any kind and died at 81. He suffocated in his phlegm.

MY daughter has had bilateral drop foot since 27, now 53. Diagnosed with CIDP, and a host of many other autoimmune diseases. Most recently as she is now in a wheelchair, and losing function of both arms, one went first, second is 70% gone. She has some ptosis, and has been prescribed a Bi-Pap machine for sleeping. Has been on oxygen for high elevations. Currently her body is wasting away. She most recently has been down a rabbit hole after genetic testing where Neuro’s at Mayo, UCI all believe she has a muscular dystrophy disease, which of course they cannot concretely confirm.

I first had occular symptoms and weakness, fatigue in 2012. I was finally diagnosed with Seronegative MG in 2020. I am fortunate to have connected with a great neuro who specializes in MG , is Seronegative friendly and am now on Vyvgart, 7 mg prednisone and 240 mg mestinon. I’m doing better at this point than either of my relatives did or are. Through ancestry.com we have identified a great, great aunt that was in a wheelchair from 50 yrs old on.

How likely is it the 3/4 relatives have a different muscle disease?

I don’t believe it. My daughter is convinced of the dystrophy but it seems to me that an MG patient could end up in a wheelchair, losing use of limbs if untreated.
appreciative of any input with any of your experiences.

 

[TheresaG]

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 the cycle I have to wait 3 weeks is the worst but I get right back up when the infusions begin again.

‘Always remembering, this is not a cure, but a treatment and so it has its ups and downs as well.
it is a great treatment for me. I am in the habit of being cautious on schedule and commitments but that is okay, I still do more than many my age.

[TheresaG]

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. The drug stays in your tissues for various lengths of time.
Long term it is a nasty drug that can cause lots of other issues. They say a 5 mg a day dose is fairly benign. I just failed going from 7-6. It has been said to me that the eyes are the most distant muscles so most susceptible to the decrease and increase.
Hope the info might be helpful. I will try to drop more when things are more stable in my life. I don’t like the negative prednisone effects.

[TheresaG]

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 and mestinon 60 mg 4-5 times a day, I’m able to mostly manage even the SOB. Though we have weather change now and that will affect me. I also feel I need to wear loose clothing or otherwise the tightness makes breathing more uncomfortable. Much like one with COPD.
When I’m  fully exhausted, at the end of the day, needing treatment, And have pushed too far, I will collapse on the bed, SOB and it can take 20-45 minutes for my breathing to become normal again.

we’re all a little different but it’s helpful to see the commonalities.

[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 government allowed trial to “supposedly” make our care more efficient. Somehow I just don’t believe it.
I am highly suspicious of these kinds of changes.

It is quite scary how Amazon has taken over so much and become so huge. I appreciate the shopping convenience but let’s face it, they have put many businesses out of business and one day it will come back to haunt us as they will have eaten up all the competition.

so no, I think they should not get in medical business.
just remember if it sounds too good to be true, it will be.
BUYER BEWARE.
I have nothing to base this on except my gut feeling. They control enough!

[TheresaG]

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 that which you do not want.

Though when I’m feeling really strong I want to fight the system to get what I need/want.

I hope you are able to get resolution to get the best you can get.

[TheresaG]

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 cold/flu, not serious.

i am fully vaccinated with Pfizer and 1 booster.
now 5 weeks after 1st symptoms I have no lingering effects.

[TheresaG]

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 can help direct you for information.
Theresa

[TheresaG]

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 about the benefits that any vaccine or medication has to potentially make you better or protect you from a deadly virus.

I just had my nurse put 2 bottles of VYVgart in me. I don’t know for fact that it might cause negative effects. Or long term, as it is new, they could discover that it has something bad in it. But for now, I feel the benefit, and I’ve experienced the benefit of being vaccinated as my Covid experience was not as bad as some flu’s I’ve had.

we all have to judge hopefully with good advice from our medical team what is the best way to proceed, vaccines and or treatments.

stay healthy.

 

[TheresaG]

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 this world, but there is so much good and lives saved as a result of the vaccine. I’ll error on that side. The alternative of being put on a ventilator, having long term lung damage is not worth risking.
All the medical people in my community including the health department said we were lucky to have had the vaccines as those that have not are the ones who end up in the hospital or morgue.

it is fact that the vaccine will minimize the Covid effect.
it is fact the ones dying from Covid are not vaccinated.

even with our underlying medical conditions, the Covid was stopped from destroying us and the experience was like a chest cold.

The government is in many ways corrupt, I’ll give you that, however, the government and all the medical researchers have done all they can to get to the point we are at now, where people are not dying waiting for a hospital bed.

It has been an amazing accomplishment to be where we are at.

in the end there will be plenty of research to know if any and what diseases were impacted or caused as a result of the vaccine, but just like those of us with antibodies that turned against us for who knows why, everyone reacts differently to everything that is put into us.

the average unhealthy American diet is a greater risk in my opinion which people put in their bodies every day.

[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]

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 in the past. Being 69 and with chronic neck and back problems it’s always hard to identify the cause.

‘For those asking about side effects-

ive had 2 UTI’s in a year, and just the fatigue after some infusions. I began taking cranberry pills and none since.

as with all of these meds, stay hydrated.When I compare to a year ago it is a huge improvement. If I overdo I still suffer, just not as much. I gave not seen any literature about cancer. I would go to the Argenx website, contact them and ask directly. I had cancer in 2014 which is why I was unwilling to take cellcept.

 

[TheresaG]

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 give it a couple cycles, remember they are learning what works in the real world in the dosing.

im working toward every other week once the baseline has been achieved which I hope to be this one, cycle 5.

Good luck.

[TheresaG]

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 cancelled the surgery, so glad I did as I was dx’d that fall.

im glad the prednisone is working for you, it did me too. But just be careful, my symptoms, cortisol, weight gain, thin skin, emotional angst, etc prednisone issues began after 2-3 years on prednisone. Wham. I was never higher than 20 mg/day. Am now down to 7/day and in VyVgart, and Mestinon.

Prednisone is great, sadly it is a devil as well.

[TheresaG]

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.

[TheresaG]

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 antibiotic so it would not turn to pneumonia or anything.

you’re still in the time you can get Paxlovid, people I know who took it git rid of symptoms in 2 days.

Good luck.
For me I’ve had worse flu’s. I am totally vaccinated.

[TheresaG]

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 improves.

My QOL test has gone from 11/13 to 3.5/5 my days still vary and I can still  burn myself out and need  a day to chill and perhaps nap. But I’m in retirement so that is fair, right?

 

[TheresaG]

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 decline as this means you are ready to get more.
It may have been mis communicated to you. I would get confirmation. Just a thought.
im now in cycle 3 mid cycle. 10 days after my first infusion cycle, I was to my old symptoms. SOB, sleeping, muscle fatigue etc. My ocular is never gone but improves on VyVgart.

 

hope this is helpful.

 

[TheresaG]

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 down to 7 mg pred. Hoping to go to 5.

But I’m not going to spoil the combo right now after 3 cycles on VyVgart. Remember it is still new and the cumulative effect is unknown and individual. That is why there is a minimum of 52 days from start of cycle to being able to get the next cycle. Some may go 8 weeks after a cycle, I’m on an every 4 post infusion #4, if that makes sense. My doctor wants me to go to where i begin getting symptoms again, which i did the first cycle then crashed hard, so not really thrilled on that idea. This is a FDA / VyVgart directive. It is super well controlled. It is also based on weight for each infusion.
I hope that info is helpful.

it is a good idea to read the trials for yourself as it contains a lot of good info. There is a patient side as well as doctor side.

 

 

[TheresaG]

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 task.

it has been short of a miracle treatment.

NO side effects as others report.

everyone responds different.

whether they are positive or negative.
that said, it does have mostly good results.
I am now middle of 3rd cycle.

i find it takes 2 infusions each cycle where it really takes off.
I’ve had some interruptions with Covid and a car crash impacting my treatment. Even with, it is a very positive experience.

anyone Seronegative needs to have a doctor and infusion company that knows how and is willing to go the extra mile to make it happen which includes lots of supplemental financial copay and insurance help.

i know they, infusion company , is hoping to get more clients on board that are Seronegative given my positive results.

I wanted to set the record straight for anyone reading this thread that I AM Seronegative! Getting VyVgart and doing well with it.

BTW, the initial phase included Seronegative and they had good results just not as good as positive because not all Seronegative are truly MGers. They may have other autoimmune issues.

again, They wanted it to market and we would have possibly ruined it for all.

[TheresaG]

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 Covid.
Hoping it  proves as beneficial once again. It was a slow improvement over the first 2 cycles.‘I’m now down to 7 mg prednisone and may stay at 5. We will see. That will be 2-3 months down the road so it is a wait and see.

Wish you good with IVIG. It helps many.

 

[TheresaG]

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 the times of day y.ou need it most.
I generally don’t rake it after 7 pm as my day is done, but if I need to read or go somewhere I’ll take one. I don’t need it to sleep. AND I have never had a crisis.
We are ALL different in symptoms and how meds work for us.
Are you ACHR positive?
Have you had your thymus checked?
Many go into remission with removal.

May I suggest you read read read.
check out MGFA for good info and log into all the old conferences for education. Get smarter than your neuro.
We are a rare group so it is so important you are seeing a neuro who specializes in MG. Can’t say it enough.

As you are young you want to get it right from the get go as you likely will need to deal with this for many years. Though you could get lucky.

From my experience IVIG stopped working for me and caused more bad than good.

The new drug VyVgart has some great results. I just finished first cycle.
So. Ugh easier than IVIG, see if your neuro can see if you are candidate.

You also can contact them directly for assistance.

There are a lot of new drugs that may be option for you as IVIG over the long haul will take a toll on you and your veins.

VyVgart, Solaris, Rituxin are all ones you may want to discuss with your doctor.
That is my experience.

I’ve also found that meds like prednisone, mestinon can affect us differently at different times for a multitude of reasons. Water intake, electrolytes, food.
Prednisone also changes our bodies internally and externally. It has long term effects you don’t want. That said you can’t stop it but there are nutrients that it strips and you need to replace.
Unfortunately the neuro’s don’t help with this much so that is why their goal should be to get you on a treatment that gets you stable and you can reduce it.

I’ll say again, you are young and have much life ahead of you so make it your goal to find the BEST neuromuscular neurologist you can.

The jittery might be MG, prednisone, or if you’re not eating well effects from that.
Potassium replacement is important with prednisone.

Best of luck.

[TheresaG]

We all need knowledgeable proactive neuro’s.

[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.