Hi everyone,
I was wondering if anyone has experienced worsening weakness from Mestinon? I know if you take too much it will make symptoms worse but I only take 60mg 3 x a day. It seems to be worst after my first dose in the morning. It is a really odd feeling of weakness and feeling shaky but when I look at my hands you can't see it. I am also on 40 mg Pred every other day but I don't believe it is connected to that because like I said it seems to be at it's worst in the mornings. This morning I woke up feeling really good but after the Mestinon I am now feeling the shaky weakness. I am truly stumped but feel there has to be a connection.
Kendra

Ask your Dr, you may need to lower your dosage. Or it maybe evn have your pred lowered. Keep us updated

Kendra, I "think" that the Prednisone "might" be doing its job -- and you might not need as much Mestinon -- or maybe, not ANY Mestinon. But, this IS, definitely, as Joanmarie said, something that you should discuss with your doctor.

The whole point of taking Mestinon is to feel STRONGER -- not weaker. The "shaky weakness" does sound like "overdose".

BTW, if it were me, I'd prefer to lower that Pred. Using the lowest possible dose of Pred WITH Mestinon seems to be the course with the fewest long term "nasty" side effects. But, tapering off of Pred is a S-L-O-W process -- may take MONTHS or even YEARS -- and MUST be done under a doctor's supervision.

Joan Marie and Jana,
I think I will try only taking 30 mg of Mestinon this afternoon and see if that makes a difference. If it doesn't make a difference I will call my Dr. in the morning. The Pred is a double edged sword. It makes me feel so much better but I am terrified of the long term side effects. I don't think lowering my dose of that is an option right now. It was precribed by my Pulmo to see if it will help with Interstitial Lung Disease and she wants me on it 3-4 months. Jana I think you may be right that I may be overdosing on the Mestinon since I am now on the Pred too. This disease is so confusing and the Mestinon is so tricky because too little or too much makes MG worse.
Thanks,
Kendra

[SIZE="3"]Kendra, I was just going to start a thread about Mestinon. It does sound like you may not need it in the morning. I'd calll the doc and let them know.
here is a link that might be helpful.
[http://mestinon.com/
I've never had it cause me to get weaker, but I've started to have little eye muscles twitch, and have little spasm when I'm over due for it.
And then I take the mestinon, and it all calms down.
mestinon, does not help with my double vision, but it helps when I'm tired, and of course it makes a world of difference with my breathing.
Best of wishes
Love Lizzie /SIZE]

Lizzie,
I will be looking for your thread on Mestinon! I will check out the link too. Thanks so much!!!
I also have the eye twitches. Kind of a wierd feeling but nothing that bothers me much. I'm so glad it helps with your breathing. There is nothing scarier to me than not being able to breath. Luckily I have never had that happen but it is definitely my biggest fear.
Kendra

Kendra, You need to go into your doctor and ask to have a fasting blood glucose level done. The fact that you are feeling shaky in the morning is the biggest clue. It may be that your blood sugar is rising at night and dropping in the morning. Taking the Mestinon may just be a "coincidence." Do you take it first thing in the morning, like so many MGers do? I take mine throughout the night!

Low blood sugar, alternating with high, can make you short of breath. I used to have reactive hypoglycemia and it can cause all sorts of nasty symptoms.

It does not make sense to me that Mestinon is causing the "shaky" feeling. Not at all - sorry guys. The twitching, yes.

So please get this checked out right away. Some people are more prone to having Pred-induced diabetes.

Annie

Annie, When Kendra said she felt "shaky", but couldn't actually see the shakiness, that sounded a lot like the little tremblings I get, and it can feel a lot like sugar problems.
I do get the "Shaky/trembling, and sometimes a rippling, in small areas of muscles" feeling when I'm due for a Mesty. But I also have prednisone induced diabetes. But I've grown to know the difference.
It may be a snowflake thing.
Kendra, have you ever been checked for diabetes? And does it happen when you're due for a Mesty, or just in the mornings?
I know, I know, I know...it's sure is a pain in the neck trying to figure it all out..
Together we'll all get there.
Love Lizzie

I know, Lizzie, if you have experience with it, then you can know the difference. The problem with your situation, Kendra, is that you just started Pred, have not been checked for blood sugar problems and it is dangerous to always think "it's the MG or the Mestinon." You may also need to ask your neuro about backing off on the dose amount and increasing the frequency instead. Like 30 mg. more often. DO NOT make any changes without speaking to your neuro - he may have other ideas about what to do.

Sorry if I'm a bit grumpy. I'm weak and tired and not having a good week.

Annie

Annie, you don't sound grumpy. Just making sure all angles are being covered. Which is extremely important.

Lizzie