after a 17 year remission I am once again symptomatic. I am taking 60 mgs of Mestinon every 2.5 hours. does anyone else take that much? I am also on 20 mg of Prednisone. Years ago the Mestinon seems to have worked better for me. My swallowing seems to be getting more difficult. I can still swallow but it is beginning to feel like stuff is getting stuck in my throat while eating.

I am taking 6x60 mestinon plus timespan at night and 20 mg prednisone. Pred for about a month maybe some improvement ut not much.

Lisa, Talk to your neurologist/prescribing doctor. You may want to ask about backing off to 30 mg. to see if you are better or worse. How do you feel in between doses? Are you better or worse?

Some people don't do well on a consistent dose amount. They increase only when they are doing activities and may not need as much when they are sitting around resting. This is not an exact science!

You don't want to have a cholinergic crisis either, where you take too much and get too much acetylcholine flooding your neuromuscular junction.

Why did your doc say to take it every 2.5 hours?

You can't go by what others take - only by what your body needs.

I take 90 mg. every 3 hours, round the clock. But, again, that's me. On occasion, I have to back off on the dose amount or increase it slightly (10 mg. only). It's very important that you keep in communication with your neurologist about everything you do! They are putting trust in you too and need to know that you're not going overboard, thinking "more is better" (which it isn't always).

Maybe you could keep a journal of how you are doing at what dose, when it kicks in, when it wears off, etc.

Steph, Sometimes Pred can take awhile to kick in. It does vary with everyone. Give it some time.

When in doubt, call your neurologist!

Annie

Do you mind me asking if the muscle sets that are affected now are all the same ones that were affected 17 years ago?....
Are there any muscles that were affected all those years ago but do not present with fatigability this time round?

I have a lot of tips about swallowing from another forum - let me know if you would like me to forward them to you.

Anacrusis

Will you be seeing Dr. Farbman today? And isn't he the first neuro you will be seeing since your flareup?

Let us know how that go's and if he suggests another treatment.

I am also curius if he has other MG patients since he is in the same practice with my neuro.

scrubbs

Hi Anacrusis,

when I was first dx in 1990 I had all of the same muscles involved but never swallowing or difficulty breathing. I had Thymectomomy within one week of my dx. This flair up I seem much more fatiqued but maybe its because I am now 52 years old. as far as swallowing, I can swallow but it feels like sometimes food or or a pill will get stuck. its not all the time but mainly when I need my meds.

I will see him today at 4pm. I will ask him if he has treated others. I will fill you all in after my appointment. Lisa

Hi Annie,

Thanks so much for the information, I have been so very confused about my meds. Years ago when I took Mestinon, I was on 60 mg every three hours and after my Thymectomy that seemed to work really well for me. This flair up has been much worse for me. When I began taking it three weeks ago but the stomach problems were so bad that I started taking 1/4 a pill every 3 hours and slowly working it up as my stomach could handle it. I am going to try to cut it back today to 60 mg every 4 hours and see how I do. Have my first Neuro appointment today. Hopefully he has treated others with MG.

Lisa

Thanks lisa. One last question (s)...Were there any warning signs whatsoever? Did it literally happen overnight? I donīt believe your lifestyle would have provoked it - but do you? Did the newer symptoms come at exactly the same time as the old ones or a little after? Anything else you can share?
I hope itīs just your age and not that itīs increased in severity this time round.

I had been having some slight symptoms for several months but I never thought it was the MG I thought it was age, stress. But the severe symptoms began all at once. I live in Las Vegas Nevada and I am a consultant/counselor for an Indian Tribe that is a two hour one way drive so I live near the reservation during the week and go home to Vegas for the weekends. My Career is very very stressful, Love it, but Stressful. The day the flair up began, My car broke down in the middle of nowhere and I had to sit in the heat for about 45 minutes until my hubby and AAA got there. That is how the Flair up began. I have my first Neuro appointment today so hopefully he will have some suggestions on what I can do to break the cycle. Lisa