hi I am new here, and recently diagnosed with MG
 

hi I am new here and recently diagnosed with MG. you can read my thread on how i came about the diagnosis here

My doctor gave me an EMG which showed a tendency towards myasthenia gravis. and he subsequently put me on mestinon.

my questions are what other Meds are used to treat this??

and also, has anyone had bad reactions to aspirin while having MG, because I seem to have extremely bad reactions to aspirin.

Welcome to the MG site!

No I have never had any problem with aspirin. There some folks who have a reaction to Mestinon - but not like what you are describing with the aspirin. lDo you take a lot of aspirin daily? It can cause stomach prob;ems all by itself.

Did they test you for antibodies? Has the Mestinon made a difference in reducing your weakness? Just wondering.

Sue

they didnt test for antibodies yet, and/or it might be in my upcoming bloodwork tests already. but they are looking to make a muscle biopsy to confirm. mestinon has made a difference, although its only been like a half day on it. ill continue it from there.

what are the side effects people get from mestinon?

Side effects vary from nothing (me) to having diaherria. Excessive Mestinon (for your condition) can make you as weak or weaker than not enough. Most everyone finds that their Mestinon dosage is almost an art - - everyone's body responds to different degrees under different conditions.

That's why your neuro is stepping up your dosage over time. Listen to your body and you will know when you have found the optimum dosage. Be sure to share info with neuro. Most understand that establishing the proper meds for each individual is tricky.

Good luck - hope you feel stronger!
Sue

I'd keep a daily journal of how you feel, while you titrate up your doses. This is more accurate for your doctor, than your memory, or verbal ability in recalling important details.

Hi, Welcome. Bruegger, do you have a more informal name?

What kind of reaction do you get with aspirin?

I'm a bit worried about possible drug interactions or contraindications given the list of drugs you're on. Some drugs are not good to take if you have MG. Here's a website for you: www.myasthenia.org At least check with your pharmacy to make sure. Some drugs can make MG worse.

An EMG is not enough evidence to "prove" you have MG. I hope they have done both the Acetylcholine Receptor Antibody (3-part test includes binding, blocking and modulating antibodies) and the MuSK Antibody tests.

Are you having the muscle biopsy done at a "large" medical institution? If not, the results may not be as accurate. They can't always "see" the neuromuscular junction.

It's a big learning curve having MG. I hope you will get a more definitive diagnosis and then learn as much as you can.

Annie

hi I am new here, and recently diagnosed with MG
 

Hi Bruegger,
Welcome to the group! I am sorry you have MG but you have definitely found the right place for support and info.
To answer your questions about what other meds are used to treat MG, Most Drs. start with mestinon and depending on the results may add other drugs. I started on mestinon a few months ago with not much in the way of results. I now take Prednisone every other day and it has made all the difference in the world. There are many other meds out there which Drs. may try but basicly they are all immuno supressants. Prednisone is fairly fast acting but there are others like Cell Cept that do pretty much the same thing but can take 6-12 months to kick in. Alot of us in this group are on different meds. Some take Imuran, some Cyclosporine, etc. They will be able to give you much more info on what they take and what has and hasn't worked for them.

To answer your other question, I personally have not had a bad reaction to aspirin. What kind of reaction are you talking about? Is it stomach issues or something else?
Kendra

Hi and welcome to the best site for MG. I too cannot take asprin, I am hypersensitive to ALL medications. I only take mestinon and have to take benedryl with that. Every person is different yet the same with MG, we all have the weakness but all suffer in different ways as you will learn from reading the posts. The one thing we all have in common is we have each other to lean on and learn from.

benadryl, well benadryl used to really knock me out, but now that im accustomed to it. it doesnt so much. it's supposedly like one of those anti-histamines used for extrapyradimal side effects from anti-psych meds. which i dont know why they use it for that reason, as it's very sedating on top of anti-psych meds.

which is why i only use artane prn from now on for that reason. as for the aspirin i get a similar effect from aspirin as i do from artane sometimes. but in aspirin it's more profound. with aspirin it's almost like the extra fine particles don't completely get digested down my esophagus and end up causing havoc up in my throat area. like it seeps down different parts of my throat. and i can feel it gristling and sandy like texture, almost like cutting through parts of my throat. and then the day after this happens i get like a terrible hangover of weakness and overall fatigue

the main reason i take all those other psych meds, is i have a terrible time sleeping. part of it is psychological, like whenever i get to the point where i feel tired, something attacks me, whether it be an actual physical problem, or whether it's a somatic part of my body attacking away at it. well it's attacked, and so i no longer feel tired and keep moving along, numb to all feeling. it could be a defense mechanism of some sort, as i have nightmares at times. so instead of getting up at the same time every day, i end up constantly chasing sleep. even if at times i just lay there trying to sleep, or lay there in a nonrestorative sleep state and wake up feeling worse than i did before i went to sleep. so therefore that explains the use of lyrica or gabapentin that i use. also looking into prazosin to deal with the nightmares caused by h1(histamine) antagonism of some of the other sleep meds i take, like seroquel/atarax. as for the seroquel it may be causing some cardiovascular issues that may be hurting my progress.

the mestinon helped very well at first had alot of energy. then i had excessive sweating, nausea and muscle weakness on the third day of taking it. and only at a half a tab, 30 mg a day. so on the third day i stopped taking it due to muscle weakness, at just 30 mg a day!! the doctor told me to call with results of how i was doing on the med. which ill do, ill also mention the Musk test, and acetycholine antibody test.

i looked at that site annieb3, but didnt find any part of that site talking about medications and effects on MG!

Artane is an anticholinergic.... can't use if you have MG.

The drug list you have to tinker to find. On it are anti-psychotic meds like Risperdal. (I don't think the list is updated to include your Seroquel)... but I'd say that the Seroquel is not allowed either.

You really need to talk to your doctor who prescribes the psych meds for you. In fact...you need to get the other test results to be sure.

This is the link, but it is not working right now:
http://www.mgauk.org/main/mgdrugs1.htm