apparently I hit send.

it's always there now.

SO, I went up to 40 for 2 doses now, but haven't seen any improvement (it's actually gotten worse). I don't really know 2 things:

1) how long I should wait before I go up higher
2) Should I just ramp way up at first and then try tapering? Like go to 60 or 70 or something very high like that until I feel right again, then start the taper again?

Do I jump back to taking it every day until I'm back to normal and then try switching to every other day?

Again, I'll ask my neurologist all of this, but I can't see him until next week and I'd love to hear how others have handled spikes. This is the first time I've had to deal with this and it suuuuucks. I was stupidly thinking I was done with this stupid disease.

Thanks for any help!

It is important for your neurologist to be guiding you if you change the dosage of any of your immunosuppressants. Most neurologists have a nurse you can contact if the neurologist isn't available. Try calling the office or perhaps you can email. Physicians who treat MG are aware that a patient's condition can decline rapidly so just about always have a way to contact them between appointments.

I hope you feel better soon!

yea, I'm not asking for medical advice from anyone here, I'm asking how people here have handled spikes in symptoms so I can consider that when talking with my neurologist

Sorry to hear you are having difficulties.

Your symptoms may not be MG, as we do get all sorts of other illnesses too.

I tried to separate out what was worsening MG from other problems by seeing how it responded to more Mestinon. If that worked, it was likely MG and I would have to think about changing the dose of prednisone.

If not, I went to see my regular doctor to find out if I had the flu, cold, etc.

Changes in prednisone are not immediately noticeable, sometimes taking weeks to show up. One time, when I was at 30 per day, and my double vision started to return, I went to 40 per day and if I remember right it was a few weeks before I saw improvement. Generally, I used Mestinon adjustment rather than prednisone adjustment for what I thought might be short-term changes.

Good Luck
Russ

Thanks Russ!

What you said makes a lot of sense but is also what's always confused me about this. I knew it was time for me to start taking prednisone when mestinon no longer did anything. And I knew it was time to taper down prednisone when I realized I didn't even need mestinon anymore. I took much more mestinon than normal over the last few days and after a point, it no longer seemed to do any good to help my symptoms and I started getting symptoms from too much mestinon instead (for me, eye and facial twitching, stomach weirdness). So I immediately think "ok, I need way more prednisone because mestinon isn't doing it" but for you, you'd think that what I'm experiencing is more from this illness than a ramp up?

I absolutely am sick with something. I just ordered a rapid test to see if it's the 'vid, but I definitely feel off in a very weird way. I don't remember MG symptoms getting worse with illness to this level, but also, I don't think I've really been sick since I got everything dialed in and I no longer was experiencing symptoms.

If this was all from an illness, that would be WONDERFUL. I was wondering that. Is that actually common and this is just the first time I'm experiencing this? Because the ramp up in symptoms very much does align with my ramp up in illness.

I guess time will tell but that theory does seem plausible and gives me some hope

sorry to hear about your dificultis, with your meds, normaly mestidone and prednisone are the choiics for mg control when i got mg some years ago, was releasd with 1000 mgs a day and 200mgs of prednione
with total agreement with my neuro i set up a plan to drop to theclose to dangerouse, minimum requirement of 3mgs mestidone and 5 mgs every other day if prednisone, this was accomplish under 3 1/2 months, after i spent hour in the net to find all about these drugs pro, cons side effects

i know that mestidone in great dose where totaly not for me, one of the most side effects is DIARRAREA,
prednisone has 3 major side effects and are the worst, when they are takin
g in doses over 25mgs for a longer perid of time
1 cholesterol
2 high blood pressure
3 wheight gainig in disprospotion
4 irribitity..

and to follow the total control over mg you need ti do the following

1 total control of your stress and emotions, being these the worst for cntrol

2 check your daylies activities such as sports, work aboits, excetera,, avoiding exertion, if needed take a nap it works miracles

3 need to change your dayli intakes, food, drinks ect..

also maby you sh ould think back if you had the covid vaccines and boosters, all of us act differently with them and drugs in general

have a talk with your neuro, and dont be afraid to ask uestions, maybe you will be able to sort all those problems

i myself had a very severe reation with my booster, it took me for a ride of extreme fatigue for 4 1/2 months wich i was unable yo walk as i should

also being 83yrs old it doesnt help

plese take crae of these problms and you will be able to be en route of recovery

best wishes

Andre

In situations like this doctors help more than we can imagine. I was in a bad spot this summer. I had a relapse of MG or exacerbation as we call it. My doc gave me advice and told me to up my prednisone and keep him posted. I put myself on his cancellation list. I just never stabilized.
Then he was a bit unsettled when he knew I was at 60 for about 3 months. I wish I would have gotten through to him ealier. He wanted to help.
Nasty disease....high dose of predisone not always best choice. High dose was giving me as much trouble as the mg.There are other options that your neuro can help you with. Calling neuros office is best for me now and if I need help I will make sure I talk to my neuro.

I think a visit with your family doctor is in order ASAP. To make it useful, list the new symptoms as if you didn't have MG and let the doctor decide what tests they would give a non-MG person for these symptoms.

We too often immediately assume that all of our problems are MG and think that we must adjust our meds first thing. First thing is a visit to the family doctor!!

I remember having many opportunistic infections, being more susceptible to every cold or flu around, and so learned to ask my family doctor before jumping to conclusions or changing meds unless it was one of those absolutely clear MG symptoms, for me double vision and eyelid droop were the first signs of under-medication.

What my neuro and family doctor both told me: Come in sooner rather than later when you have problems as with MG we are already sort of teetering on the edge of an MG crisis. I started then with my family doctor, who if she thought it was MG, passed me through the system to see the neurologist, much faster than I could have gotten in on my own (I have my medical care at an integrated place where the neuro and family doctor are in the same system and feel free to pass me around! -- Mayo Clinic).

I found the same thing with Mestinon, too much made me pretty fidgety, twitchy, blinky, and was worse than not at all sometimes.

Hope you get if figured out
Good Luck
Russ

As I reread your question you made it clear you just wanted to know what others have done.
I understand.
I had severe mg crisis 10 years ago. It was in the beginning of my disease and I didn't know which end was up. I didn't want to do any prednisone which was a mistake. Ended up on ventilator and near death. Had plasmapherisis and IVIG and 60 of prednisone. Onto cellcept. 1 year later ok.
A couple years ago I had a droopy eye again. So back up on prednisone then back down.
This past summer I had exacerbation. Droopy eye. I thought it was allergies so I kept it hoping it would go away.
Then I went to neuro....he said he has never seen it go away with intervention.
Anyway it progressed. So I went up 10 a week until eyelids quite drooping. Miserable summer. Now I feel like I went though TRAUMA as I get better.
Anyway last time I saw neuro we decided it was time to drop down the prednisone. My doc said he has seen it over and over that a short term of high dose of prednisone followed by dropping prednisone to will solve problem. He was also thinking prednisone could be causing more problems than mg itself. If the drop doesn't work we will do plasmaphereisis. I was also loosing sleep on the prednisone and anxiety was getting bad.
Anyway, I got antianxiety for sleeping and last night
I actually slept all night. My lack of sleep got so bad I was consistently only sleeping 4 hours a night. Crazy.
Anyway he also said there were new treatments out
and some to be out soon.
I hope your visit goes well Monday
Ann

Also I take mestinon like water right now. Every 3 hours.

Sorry to hear about your flare ups. I usually go back to prednisone doses that helped remove symptoms. It usually takes 2-4 weeks before I come down on doses. My highest dosage is 30mg/day. I decrease every week by 5mg until i get to 15 mgs a day.

It would be helpful to ask your dr about a plan to adjust properly. It would also be good to have honest conversations about other factors causing the flare ups to try to modify your day or just keep those things at a minimal stress level.

Edit: I'm also on 6 week IVIG infusion which helps with reducing prednisone levels. You could ask but I was never told by any of my drs IVIG is a proactive treatment. You have to be in a crisis to start treatments. Because of this treatment, I have to take mestinon once a day and before bed. That can also reduce symptons because high dosages of prednisone for long periods of time can hurt more than it helps.

curious to know how your visit went.

A number of weeks ago I had a Flair-up due to too much physical exercise. I had reduced my Prednisdone from 20mg/day to 10 for a number of months before this exacerbation. When my double vision recurred, I immediately increased back up to 20mg/day and called my Neuro and PCP to advise. I stayed on 20mg/day for a couple of weeks then reduced back to 10, which is where I am today.

I also have IVIGs every 30 days as a maintenance treatment to keep symptoms at bay. IVIGs seem to be given when folks are in distress and many consider it an emergency treatment. For me, I skipped a couple of IVIG treatments to see if they really had an effect, and they did. So I went back to them. I had heard that the cost of this treatment is a major reason that they are not used more often as Insurance does not want to pay. I do appreciate that the VA is allowing these treatments as they do help me maintain a semblance normalcy.

We recently met with my Neuro and asked if I should/could get down to 10mg every other day and he suggested that there really is not much difference between 10mg/day and 10mg every other day. So, I will stay at 10mg/day for the foreseeable future. I also take 420mg/day of Mestinon and 150mg/day of Imuran. We also asked if I could/should reduce my Mestinon intake and he suggested we stay where we are for a while. My Neuro's approach to this disease is on the conservative side, which I appreciate.

As others have said - there is a balance that each of us must find. Disease/disorder symptoms vs medication side effects.

I unlike Andre, have not found this balance yet but am getting closer.

Good luck -

Scott

How did visit go?