Hey Kendra,

Sorry you are going through this. I know how scary and frustrating is can be. It could be you just need to reduce your mestinon per your neuro, but I think you should have some lab work done and see your doctor to rule out any other problems. It's always better to be safe than sorry...right? Just so you know, I get those twitches too. Take care and let us know how you make out.

Hugs,
Pat

Thanks everyone for the input. I just left a message for my Neuro describing what is going on. They should call me in the morning.

Annie,
I think you may be onto somethng about it being my blood sugar. I specifically remember the Pulmo telling me we needed to be careful with the Pred to make sure my blood sugar was ok. After I read your post I Googled symptoms of low blood sugar and I have ALOT of them....
trembling
heart palpatations
anxiety
sweating
irritability- My husband and boys have noticed this and I feel it!!!
No Annie you do not sound grumpy!!! You're advise is always appreciated. I hate to hear you are tired and not feeling good yourself. Try and get some rest.

Lizzie,
I have never been tested for Diabetes but have no family history of it. If I have it now I am sure it is Pred induced. As for the shakiness and weakness it seems to start after I'm up an hour or so. It is after I take my Mesty and other morning meds that it start but I don't remember feeling this way before I started the Pred. Although my Mesty dose was upped to 75mg Fri. from 60 so that is what made me think that was causing it. Today I have felt weak and shaky all day and I am completely exhausted and feel like I could lay down and sleep for hours. Thanks so much for the support.

Pat,
Yes I agree it is better to be safe than sorry. Thanks so much for the encouragement!!!
Kendra

for some reason, many physicians are not aware of the fact that the time of the day in which you take your pred. is very important, and don't adress this at all.

we normally have what is called a diurnal rythym. the highest amount of cortisone is during the early morning hours, and that is when our body "expects" to have the highest level. so if you take your pred. during those hours, it may decrease your side-effects significantly.

alice

Since I'm a narcoleptic, this doesn't apply to me, but for those that have problems sleeping while on Prednisone, taking it in the morning will help in going to sleep at bed time.
Also to pick up on what Alice said, Cortisone can fluctuate during the day, and from day to day.
So, this might account for the Mestinon being needed more on one day verses the next.
It also depends on what you've been doing.
Love Lizzie

Alice,
Thanks for the info. I do take it in the morning but am also taking 60 mg of Mestinon. I am wondering if on the days I take the Pred. I need to wait and take the Mestinon later in the morning? Hopefully I will get some answers today when the Dr. calls.
Kendra

Kendra, Annie is smart -- SCARY smart -- but, I'm praying that she is wrong. Not because I want to be right -- but, because I hate for you to have yet ANOTHER thing, diabetes, to have to deal with. (Yes, I know that it could go away when you STOP taking Prednisone, but with the dose you are taking and the REASON you are taking it -- that may be quite a while down the road.) So, I hope that this IS just too much Mesty. Because that would be so SIMPLE -- so EASY to fix -- and you wouldn't have to "live" with any nasty consequences of this "good/bad" steroid.

I don't HATE "my" MG. I get to stay at home -- "piddle" around the house -- sleep as late as I want -- go outside if it is pretty -- stay inside and do art/watch tv if it's not. But, I HATE MG for some others -- for the way it messes up young lives!! Right now I am really ANGRY at YOUR MG!!!

this is indeed possible, as steroids have a direct effect on the muscle, apart from their effect on the immune system. so possibly you are a bit stronger in the first few hours after you take it. you can just try to take the mestinon a few hours later and see if you are any better. also, if you drink coffee in the morning, this too can have an effect on your muscles (in a relatively complex mechanism), which can add to it all.

just give yourself time to get to know how different things affect you, and don't be afraid to experiment with it. after all a lot of what we do (even as physicians) is trial and error.

many neurologists will tell you that when patients take alternate days of steroids they are much better on the day they take them, then on the day they don't. this is most likely due to a direct metabolic effect on the muscle as the immune system doesn't work that way. and you can't have good immunsupression one day and less good on the next.

also, it is not only taking the pred. in the morning vs. the evening. it is taking it early, eg-6-7 AM. I found that to me it made a very big difference if I took them at 6 or at 8. and when I was on relatively high doses I tried to take them no later then 6:30. it may of course be different for someone else. and I also had very severe side effects. the most important being that it had a very negative effect on my muscles. ( which is rare in MG, but does happen).

hope this helps, I know it is a bit confusing, and I hope that your doc. will help in clearing the haze a bit more.

alice

Jana,
I had to laugh out loud when you said that about Annie being SCARY smart. I have thought the same thing. I was certain when i first joined the forum that she was a Dr. or at the least a nurse. She is awesome!!! I too am hoping it is NOT another thing I will need meds for. I really feel like I am pumped too full of meds right now as it is. I am all for taking meds when they are needed but right now I am on a cocktail that was all started about the same time and it is confusing trying to seperate everything out.

It is nice to hear you don't hate your MG. That is awesome. I wish I felt that way but I feel like my life has been turned upside down. I have always been a very busy person and am having a hard time adjusting to the fact that I just can't do all the things I used to. I know acceptance will come in time or better yet maybe they will find a combination of meds that do the trick. Until then I just try to take it one day at a time and enjoy the things I am still able to do.
Kendra

Alice,
I so appreciate your input here. I think tomorrow I will wait and take my Mestinon around noon instead of in the morning when I take the Pred. I am glad to hear you think it is fine to experiment with different times. I do drink coffee in the morning so maybe that is a factor too. How would coffee effect MG or are you saying it would be effecting the meds?

Very interesting that even a 2 hour difference in the time you take Pred can make a big difference. I may try and take it an hour or so earlier tomorrow too and see if that makes a difference. Thanks again. It is so nice to have a Dr. amongst us.
Kendra

Yeah, and Alice isn't even "scary smart!" She's super smart.

Good point about the cortisol levels, Alice. Did you guys know that cortisol is the reason why you have jet lag? It's because you are messing with those levels by traveling to different time zones where your body has to adjust to sleeping during times it's not used to. If you've ever been on a trip west or east for 8 hours or more, you know how bad it can get. I imagine that would mess with your MG too.

I guess this is why I'm "scary" smart (see attachment). Thanks, Jana, I think. BOO.

That and all the lovely medical experiences my family and I have had.

On a more serious note, echoing a little of what Alice said, I don't think a person EVER comes to grip with what MG does to their life. You can make nice with it, adjust what you can do, etc. But my MIND still wants to do what it wants to do. Some days my body will let it but others, like after being stupid and carving 3 pumpkins, it tells me to do absolutely nothing.

You should all go easy on yourselves because MG sure as heck doesn't.

Annie

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