Mestinon making weakness worse???
 

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. :confused:
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.

Mestinon making weakness worse???
 

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

Mestinon making weakness worse???
 

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

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

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

Mestinon making weakness worse???
 

:hug: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.:hug:

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

when do you take your pred?
 

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

Prednisone
 

Mestinon making weakness worse???
 

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

mestinon making weakness worse???
 

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

mestinon making weakness worse???
 

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. :eek:

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

hehehehehe -- you'd have to know me -- SCARY smart is about the biggest compliment you can get from me. IQ is my favorite subject -- LOL!!

Hey guys,

Thanks so much for the info. re. prednisone. I didn't make the connection between peak hours of cortisol and when a person should take their prednisone.

One day, a while back, I took my prednisone twice in one day by accident. What happened was the mestinon and prednisone look almost identical. Anyway, I had taken it really late at night and it messed up my sleep. It was pretty scary, and i even called poison control because I had basically taken 140 mgs of prednisone in one day- very freaky.

Anyway, this episode messed up my whole pill-taking schedule. I basically take my prednisone at around 3pm everyday. I realize now that this is obviously why I am having trouble sleeping, lots of side-effects, and maybe even why my MG symptoms don't get better until pretty late at night...DUH! lol

Thanks for the info., guys. I will take it tomorrow very early in the morning. Hopefully, this will improve things.

P.S. Are those new pumpkin carvings, Annie? They're really nice!:)

Nicky

mestinon making weakness worse???
 

This is for the boffins since I know what they are now (LOL)

Alice,
I would love to hear your medical opinion on what I've discovered...
After spending the last couple of hours researching all my meds and my symptoms I may have come up with something. From what I've read the Dapsone causes an increased platelet count and weakness. I am going to call my hematologist in the morning but think that is what is causing this horrible fatigue and shakiness. I have Thrombocytosis which is a high platelet count. I am on Agrylin which keeps it well controlled and my platelets run around 450,000-500,000 now. I am honestly terrified and am not taking the Dapsone in the morning until I talk to my Hemo. I am so scared that my platelets have skyrocketed and I don't want to risk having a stroke. Do you think this could be a possibility?
Kendra

Kendra, Sometimes if my symptoms are mild and I'm going to just be at home, a strong mug of coffee can take the place of my mestinon.;)

Hugs,
Pat

Hi Kendra,

have you had your potassium and iron levels checked.
I was low in iron, and I was sooooo tired all the time.
Pred can lower your potassium, and it can cause all sorts of probs, including heart probs.
Not saying this to worry you, and it may not be either of these, but its as easy as a blood test, and worth checking.
Kate

I think that calling your hematologist and making sure that there are no unwanted interactions between all the medications that you are getting is the right thing to do. it is also fairly easy to do a blood count, and see if there is any increase in your platelets, instead of being worried about it.
are you on aspirin? because even with relatively high platelet counts in someone who is young and has no other risk factors it is a very good prevention for stroke.
I also think it is OK to skip a dose of Dapsone if you are concerned about it. I believe it was given as a preventive abx. and not treatment?
I know it's really tough to have to deal with so many things at once. it may be good if you could also get all your physicians to communicate with each other, and that way you would feel safer with the treatment you are given. because obviously you don't want one thing to get better and the other to get worse.

alice

Thanks Annie,

but, I would be super stupid, given the fact that I been studying medicine for my entire life, if I didn't know some. :Hum:

I have to regretfully admit, that even though I have been perscribing steroids for years, I never realized what it really does, and how much one hour difference can make a difference.

I have always listened to my patients and thought that they know what they are experiencing best. but, this made me realize how hard it is to really know.

since I became ill, I stopped saying the stupid sentence-Oh, I can imagine how you feel. that we, the physicians say so many times, thinking that we really can just do an intelectual trick and put ourselves in our patients shoes.

no way, we can't. we cán't even know how we ourselves would feel under such circumstances, so how the heck can we know how someone else would?
we just have to listen and hope we can get a glimpse.
I have never carved pumpkins, so even if I try to think what it would be like not to be able to do so, I can't really.

I know that I have gradually found the way to do what I want to do, but some of it, was by changing what I want to do. just like the king in the "little prince". or doing the core of it, but not doing it.

no, I don't like this illness, and there are times when it really makes life harder, but I don't hate it that much any more either. I just see it as something that's there.

I don't know if what I say makes sense, or helpful in any way.

and people really only get a glimpse at each other's life.

this is what my son gave me, a year ago, when I was talking to him about how hard it is to understand (or explain) what one is experiencing.

The stars are the apexes of what wonderful triangles! What distant and different beings in the various mansions of the universe are contemplating the same one at the same moment! Nature and human life are as various as our several constitutions. Who shall say what prospect life offers to another? Could a greater miracle take place than for us to look through each other's eyes for an instant? We should live in all the ages of the world in an hour; ay, in all the worlds of the ages. History, Poetry, Mythology! – I know of no reading of another's experience so startling and informing as this would be.

Walden, Thoreau

Annie
 

Your pumpkins are such a beautiful work of art!;)

Hugs,
Pat

Annie, your pumpkin carvings are AWESOME -- BUT, this is all I could think about.......we grew pumpkins in our garden(s) this year. Of course we are organic (no pesticides) and after the pumpkins got really big, we picked them and put them into the barn to "cure". Didn't help -- the squash beetles STILL found them -- and ate holes -- and they rotted. Talked to some pumpkin farmers -- pumpkins just HAVE to be treated with pesticides or else they have the same problem we did. So, I'm thinking........you carved THREE of these TOXIC fruits!!!!!!!!!!! I'm cringing. And, you did say you weren't feeling well, right?? I now use borax (the washing powder) mixed with sugar (equal parts) -- and pour that around the foundation of my house to keep away ants. May try THAT next year around some pumpkins.

I get my pumpkins from an organic farm. They stay nice and happy in our dark freezer room. Never had any bug problems or imploding. So keep them in a dark, cold little area - on some kind of paper or box cover - and they should stay in good shape!

Thanks, I love carving. Anyone can do that, BTW (meaning, Bring Tools With). ;)

Annie

And there is a book out there that I got for my Mom called ""Who Knew." It has great, easy solutions to pests and all kinds of things.

WHEW!!! Relief!! So glad you didn't get poisoned!!

Of course, bugs ARE worse here in Tennessee -- and this summer was the WORST ever with all of the rain!! We STILL have mosquitos, crickets, and wasps EVERYWHERE!! We had 18 HUGE pumpkins -- and lots of smaller ones -- all got "et" by the bugs. :(

Gonna have to find a copy of that book!

pumpkin carvings
 

Annie,:cool:
don't know about "anyone" ,but when I tried making a pumpkin lantern with my son for school, it was quite a disaster. in fact, this pumpkin looked like it had severe MG, and also a stroke at the same time.

the only "disaster" that could compare with this, was my role as a scarecrow in the "wizard of Oz" in fourth grade. It was quite clear then, that the theatre is not the right place for me.

although, I did have second thoughts about that, at some point, after I was able to "imitate" an MG patient in crisis, so well, that I managed to fool the head of anasthesiology in my hospital. (although, not the neuro, that saw me a few weeks later).

alice

Try planting marigolds around your pumpkins (or any other veg when growing). For some reason bugs HATE marigolds - so it helps as a defense...and they're really pretty too!

Don't know hwat you do once you pick 'em. Inside and raised off ground maybe with marigolds underneath?? !! (lolol)

Sue

I know that this works -- but, marigolds are one of my WORST allergies. *sigh* I can just LOOK at one and start itching and sneezing.

I meant to say "thank you", Sue. I hit the "post" button too quickly.

Mestinon dosage
 

I am glad that you can stay at home and do what you want - I think that is the best thing one can do with MG.

I wish that I could stay at home...my doctor won't support me in applying for disability since it is his opinion that I can work and be "normal". In my real experience, I just can't work full time now with MG (I love to work and I am trying!) and my life is slowly going down hill mostly due to finances and stress. I wish I could relax...I think I could find happiness and have time to do things I still can do.

Now as to Mestinon making weakness worse I have to answer not exactly but sort of in my case. I had a bad experience of taking too much Mestinon and had to have my prescription reduced. I got stiff and twitchy muscles and then started to have a hard time walking, sitting and moving in general but it was due to tight muscles. This is not exactly weakness, but I felt weak since I couldn't function. Now that I know what too much Mestinon feels like I recognize it when I need a little less.

My doctor said not to change my dosage at all, but I have realized that he is wrong in this. Some days I need 90 mg/day and other days I need 120 mg/day but there is not any consistancy in how much I need since every day is so different (and sometimes I CAN go 1 or 2 weeks with a consistant dose like my doctor wants me to). I am frustrated right now in the way my doctor talks to me about my Mestinon dosage. He won't discuss the possibility of me adjusting my dose as I described above. I have to adjust the Mestinon dose or either I get weak with not enough or I get muscle twitches with too much....I have to listen to my body. Now of course if I could stay home and do what I want and only work a little I am sure I could find a dosage that works and stay with it.

Please tell me about any of your experiences with adjusting your Mestinon dosage. I need some opinions so I can talk to my doctor with information.

:)

Annie, I really REALLy like your pumpkin carvings. Thank you for sharing.
:D

Coffee
 

I have been experimenting with coffee and I think that one cup of coffee or tea replaces about 15 mg of Mestinon for me. I have to be careful with caffeine or I get twitchy muscles. I don't drink coffee or tea every day but only with I feel extra weak and it sure helps. Of course coffee can't replace Mestinon since there are other effects from too much coffee that I don't want, but a little coffee is great!

Pumpkins and Pesticides
 

Thanks for the reminder about pesticides - I hate pesticides. I have grown pumpkins and other squash many many times and rarely get squash beetles or any other insect and I never use chemicals. The farmers are WRONG. Maybe if pumpkins are grown in the wrong climate then pesticides are "needed". Try another variety of pumpkin that is better adapted to the area you live. I think Native Seeds Search sells pumpkin seeds online and there are other sources for heirloom type pumpkins and not the hybrid seeds. Farmers have grown pumpkins for more years that I can even guess at and they didn't have pesticides until recently in history.

Pesticides are so bad for all people and noticably for us with MG. We are like the canaries in the coal mine for pesticides.

I love growing food, I think next year I will try some pumpkins.:D

mestinon making weakness worse???
 

DesertFlower,
I agree with you that staying home is the ideal situation for those of us with MG. I wish that I could stay home too and symathize with your struggle with wanting to work but not feeling like it. It doesn't sound like your Dr. is very understanding of MG and how we can feel decent one day and terrible the next. Adding financial problems and stress to the mix makes it so much worse too. Is it possible to find another Dr. in your area who has more knowledge of what you are dealing with?

My Pulmo called me back today and took me off of the antibiotic. She said the weakness, dizziness and headaches are all side effects of the med and she is sure that is what is going on with me. She sent me for a CBC and I should get the results of that back tomorrow. I have had the twitches you mention, mostly in my eyes. I only take 60 mg 3 x a day so don't think mine is from taking too much. I think it is just one of the side effects.

As for adjusting my dosage I haven't played around with mine too much. When I first started it I was getting sick everyday so he took me off of it for 2 days and we restarted. He hasn't wanted me to go above 60 mg every 6 hours. Now that I am on the Prednisone I don't feel like I need anymore than what I take usually. One morning I felt especially weak and took 1 1/2 pills. I think that was too much for me. Good luck talking to your Dr. and I will be praying he will listen to you and your concerns. Try to take care of yourself!!!:hug:
Kendra