Sick of this disease....
 

Today all I did was clean out two litter boxes and take out the garbage. I am winded and my muscles are cramping really bad! I mean they hurt enough to make activity very painful. And of course the spasms have started up again too. All I have done other than that all day is sit at this computer. It is ridiculous. I have 3 boys I have to take care of. Needless to say it has been very difficult over the last 5 years.

I take 60 mgs of mestinon(the generic actually) 3 to 5 times a day. I take the max dose(1800mgs) of Gabapentin a day to counteract the migraines from mestinon. Other than that I take a bunch of unrelated drugs. I do not tolerate pred well at all. My heart pounds and I feel like I am gonna pass out if I dont go up super slow or take more than 30 mg. They are gonna start me on Imuran. Finally got the ok to start it today.

I just feel like the meds are not doing enough for my weakness. And then the cramps and spams are very hard to deal with. I have had this disease for 5 years. I recently had a thymectomy, I had gone undiagnosed until recently. I have a few other things wrong with me too but I definitely find the MG the hardest by far to contend with. Even the pain from osteo arthritis and fibromyalgia, or the difficulties of celiac disease, do not compare to MG.

Just wish my life was not spent on a couch(out of necessity).......:(
Carrie

Sorry I have been reading a lot of posts and I am confused about something....

I see that a lot of people are take high doses of mestinon. My neuro doctor said no more than 90 mg at a time and no more than 240mgs in one day.

Besides I have trouble tolerating any more than 90 mg in a 4 hour period and definitely no more than 240 in a day. If I take 90 then my muscles get super spasmy, I start to get the really bad stomach side effects, and the migraines become unbearable. I have had what they said was an overdose before. That was really bad scary. I was taking recommended amount.

So just curious what actual dosing is and if anyone else has these issues with higher doses. Thanks all......:grouphug:

Actual dosing is set by individual. I'm on 90 3x per day and allowed at my discretion to take up to 2 extra doses a day if I feel I need it.

I am sorry you are having a really hard time right now. I know how frustrating it is when you want to do the things that you "should" be able to but can't. You want to take care of your kids, husband, house, pets, etc. but just aren't physically able to. I will be praying for you.

Shannon

I know what you are feeling as I have been there. Take heart as I went into remission for 17 after my thymectomy. I was taking 120 mg mestinon at a time and everything else, now I am out of remission but can't take any of the meds as I react to badly to them. This morning I drove to town to pay 2 bills and by the time I got home I could hardly move my arms. Summer is VERY hard on us MGer's so try and make your family understand. Don't feel bad that you have to stay on the couch, I know that is hard as MGer's seem to be the "have to get it done now" kind of people. My husband wanted to go to the movies tonight but I just can't, he says he understands but... I can't help but feel bad that he is not getting 100% of me, so come rant with us as we all have or are going through the same thing and we are hear to share the frustration. :grouphug:

ooppss I meant we are HERE not hear..LOL, finger farts when I am weak..LOL

Carrie, I haven't been on for awhile - not feeling well. But I wanted to say that I hope you will ask your primary doctor to make sure you don't have any electrolytes that are off that could make your muscles cramp up. Or thyroid either. And it's hard to know if you are taking too much or not enough Mestinon. When you are off of it, in between doses, does the cramping get better or worse? If it gets better, you might be taking too much. If it gets worse, you may need more. I just wanted to make sure you are checking all possibilities. Take care.

Annie

I take 90 mg. every 3 hours, round the clock.

PS - Do you take vitamin D and calcium?

When I was doing really well, I took 60 mg. every 4 hours & a 180 mg. Timespan at night.
Now, with things not doing so well, I take 90 mg. every 3 hours until midnight & a 180 mg. Timespan then.

Jenna

i konw how you feel.i took reg mest,tapering up slowly to 60-90 mgs every 6 hrs. i had horrible spams including my stomach which then made me vomit. we sat and just laughed watching my face and ars twitching away!! dr then put me on time rel mest starting again slowly at 90 mgs bid then increasing slowly when i felt ok. i took the second 1/2 at lunch time and had no issues. i also took 60 mg reg mest last week 3 times[daughter moved etc] and the spasms started immed ,taking 180 mg of time rel mest made my stomach ache .not too bad but the time rel ismuch better for me. they want to start me on imuran but i will wait until the fall. vacation is coming up, i'm going to be a gramma in aug,we have a wedding in new york in aug etc. i do not want to screw up the summer with sideeffects since we only get one a year since i was disabled 8 yrs ago from another illness. maybe you could try ths time rel also taper up slowly is the best thing to do. have a good w/e!!

Jenna, I'm pretty much the same as you. When I was doing well, I was taking 60mg every 3 to 4 hours and 180mg timespan at night. I've been taking 60mg every 2 to 3 hours with the timespan at night most recently. My doctor just increased it to 90mg every 3 hours with the timespan at midnight. We also settled on IVIG once per week and I take CellCept.

By the way, as an update, I had posted about a month ago asking if people could work full time. I have been out of work since the first of April on short-term disability but had hoped to be back at work by the first of July at the latest. Oh, well, it didn't happen. My doctor has said no and the disability was extended. It doesn't matter, I couldn't have done it anyway yet. But I am beginning to feel a little better as long as I keep things slow and behave. :)

I take 90mg 4 - 5 times a day, that depends on when I get up and go to bed. I get more sleep in the summer, so usually only 4 doses.

I tried 120 mg at a time for about a week. That was way too much, my muscles were twitching like crazy.

Hi
 

I take anywhere between 60mg every four hours to 120mg every four hours I vary the dose according to how I feel. But Often if I take 60mg I will get up and try and do something and find that its not enough, even after leaving it an hour.

Sometimes on 120mg I find Im still shuffling so I find it very frustrating as Im caught in a vicious circle until they finally admit I have MG and put me back on steroids.

I have once when I was really really really bad taken 180mg in one hit. I had no side effects, but I wouldn't recommend that to anyone. I did it as I was so frustrated at not being able to move or get out of bed.

Take care
Rach

I take 3 x 60 mg...so 180 mg. every 3 hours. So depending how long I'm up during the day - it can be between 6-7 doses totalling 1260 mg....PLUS another one - sometimes two timespan at night. (1620 mg. total intake). Stomach issues - oh yeah. The price to be paid for being able to try to function. Oh yes - also on Cellcept and IVIG.

Lydia

I take 3-4 doses of 60 mgs every 4-6 hours. At one point, I was take 6-doses of 60 mgs every 3-4 hours. That was too much! I think it was making my breathing worse.

I also have plasma exchanges every other month or so...

I also drink a lot of caffeine...Pepsi, coffee, tea...Works like medicine, especially in this heat...People always ask my why I'm drinking pepsi at 9am...I'm like, because it's scrumptrulescent! My teeth disagree, though. :(

Wow thank you everyone so much for replying. It really helps to know what everyone else takes. I cant believe so many of you take such high doses when my doc says no more than 240mgs a day. Well actually he kinda worded as, if you need more than that you need to let me know and we need to do something more to help.
I did that once and that's when they put me on Imuran. Started that today. I am nervous, I hate starting new drugs. I am allergic to tons of them.
But I took 90mgs earlier as I am very weak today OMG I was so spasmy and crampy it was crazy. And then I felt like I was gonna throw up I was spasming so much. And then all the other good stuff too, sweating, diarrhea, etc.
I have taken the time release before and I almost feel like it's worse than the other. I don't know I am just weird I guess. Well again thanks everyone. I hope everyone makes it through the heat. Hot here too!:grouphug:

i felt much much better on tr mest dr wants me to imuran but will wait till summer is over don't want to screw up all the good stuff:rolleyes:

Just another view, but I am on 240mg of mestinon a day and also Cellcept. I have IVIG every 4 weeks also. I was on Immuran to begin with, but had serious side effects......not to scare you.....as we are all different...but had to get off of it and went to Cellcept...which is doing better. Hope you don't have an effects and things get better for you!

my ? is -do you get used to the dose of med you're on and then feel worse as it wears off? if you never took them would you not feel as bad?do you need to increase as your body adapts to meds vs getting worse disease wise? i know there is probably no answer to this question but it does puzzle me at times!!:confused:

that's my ? too. One day I took 1/4 of my dose all day and felt ok - but weak. The next day I went back on reg dosage and felt fabulous! Coincidence or do you really adapt to Mestinon. A question for my neuro next week. Will let you know what the answer is.

Sue

I take 480 daily!
 

Hi Carrie,

Sorry to hear you aren't feeling well. I know how frustrating it is to have to spend so much time on the couch when there are so many things that need to be done. It must be so difficult to have 3 young boys to care for. I just spent over a week and a half on mine, but I made it off today! Having had this for 5 years I'm sure you know a great deal about it. May I ask when you had your Thymectomy? Have you seen any improvements yet? I would have to agree with Annie and ask your doctor to check your electrolytes & Thyroid. I've had hypothroidism since I was 21 and it will cause fatigue. Have you tried eating bananas? If your potassium is low, they will help some of the cramping in your legs especially. I hope the imuran helps along with the mestinon and you start feeling better. Take care.;)

Hugs,
Pat

I had my thymectomy in April, the 14th to be exact. So it has been nearly 3 months. I have not noticed any improvements as of yet. Other than my chest pain has gotten much better. I have had hypothyroidism in the past. But recently when checked I have been fine without medicine. They just checked it again in June and they did not say anything about it so I am assuming it was still fine. Hopefully, who knows. I dont really like bananas, but I did buy some potassium supplements. And then realized they are only 3% of daily value so I dont know that is going to help. And I am really hoping the Imuran will help too. Thanks for the info. Hope you are having a good day.

Hugs
Carrie

Hi Carrie,

Only three months, you're barly healed from that. While it took me 3 years to see the full benefits of my thymectomy, I did see small changes almost daily after the first year. While we are all different with this desease the same is true for our thymectomies. As you know just from reading the posts here, almost everyone improved dramatically over time or went into remission. You have so much to look forward to and I hope you start seeing improvements soon. In the meantime I hope the combination of Mestinon & Imuran helps you to feel better and stronger. It was so nice 'talking with you'! Feel better!;)

Hugs,
Pat