Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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unsure81 10/01/2013

Hi everyone - can anyone help with this or relate to it?

I have been on 30mg of Mestinon 4 times a day for 7 days now - the doses takes around 40mins to kick in (I take with food) and after an initially wooziness (which seems to be settling now as I adjust to it) my face is lighter and my eye, nose and face droop are all much improved! It's not perfect, I still have a drop in my top lip but nothing that anyone would notice and I have actually been able to smile for the first time in over 7 months which is wonderful!!! :) I've also noticed my breathing is easier, no food has been getting stuck in my throat and walking is easier - I feel more agile and can nip about around the house without feeling like everything is such an effort! I actually went out for my first walk in months on Sunday - I was slow and tired after but it was so good to be out :)

BUT...as the dose wears off which was after 2-3 hours and now seems to be more closer to 2hrs now, all the symptoms come back with, what feels like, a vengeance?! I don't know if its just a shock after feeling a little better or if I am pushing my body too much during the times the tablets are working but I am sure I feel worse than ever when it wears off??

Does this make sense to anyone or does this happen to any of you?? I can increase my doses to 60mg 4 times a day next week so maybe this will help??

Also, I feel ungrateful saying this as all I have ever wanted is answers but now the trial on the tablets is working it is scary to think after all these years that i actually could have MG.....I am wondering if this does mean I do have MG? As scary as it is, I need the Dr to tell me what this means so that I can deal with it...if that makes sense?!

Thanks for any help any of you can offer :)
Eve.x

GreenMarie 10/01/2013

I started out with 30 mg TID and noted no imporvement.
When I went to 60 mg. it was magic like someone had just thrown a switch, but I still had gaps. We then added 180 mg. of the Time Released mestinon and I add in the 60 mg. during the day titrating it to need. That can end up being 2-4x/day depending on activity and other meds I am taking. I seem to get good round the clock coverage this way.

It takes time to come up with the right combination that works for you and it is a collaboration between you and your physician. You have to convey where the gaps are and let him know so he can adjust the doseages. I do believe everyone should have a prn order for parts of this that they can adjust to physcial activity level and added meds that compete.

So yes...what you say makes sense. You need to stop the yoyo effect by getting your meds to cover you over a longer time span.

Hope this helps! Hugs, Marie

SeattleWriter 10/01/2013

Yep, that sounds like Mestinon working! It'll take you some time to get your levels right so that you don't get that vengeful symptom return (I'm still figuring it out after several years of taking it) but that's all about what level of Mestinon you have in your bloodstream at a time. The wooziness definitely still comes around when you increase your dosage (I'm now up to 90mg 4x day) but other than that, it's been a great drug therapy for me.

Barbel 10/01/2013

I am so glad that you are getting some relief from your symptoms! You will get it figured out. I had to call my neuro several times for him to increase mestinon at first. Good luck!

unsure81 10/01/2013

Thank you all :) it's good to know this happens when finding the right dose and that the vengeful symptoms isn't just me! Haha!!

Do any if you know how reliable response to mestinon is for a diagnosis? I am still waiting on antibody test results but if they show nothing I am wondering if this response alone is likely to lead to a diagnosis or whether they will just let me continue with no diagnosis?? I know I am second guessing my Neuro and no one knows what he will make of this apart from him - but I just wondered what your experiences or opinions might be on this??

Many thanks again
Eve.x

SeattleWriter 10/01/2013

My response to mestinon, together with otherwise unexplainable respiratory weakness in a pulmonary test, was how I was diagnosed. My bloodwork showed no antibodies, and my EMGs were within normal ranges, so my neurologist relied on an empirical mestinon trial.

unsure81 10/01/2013

Thank you SeattleWriter :) At least I know there is a possibility of a diagnosis....no matter how scary it may be!! My Neuro seems lovely and I really don't think he would stop the Mestinon as it is helping, but I wasn't sure if he would actually diagnose from that alone.

Thanks again
Eve.x

deleted_user 10/01/2013

Hello Eve...In the 2000, I was taking 60 mg of Mestinon 4x daily, plus 1 time-released mestinon at night. Today, I taking from 2 to 3 - 60 mg daily, no time released. Living with MG is no joke, some days take you max amount and other days take less. DO NOT BE DISCOURAGED. Keep positive and read everything you can about MG.

unsure81 10/01/2013

Thank you for your advice :) x

deleted_user 10/01/2013

30 mg will weak at about an hour, so not surprisingly you feel it wear off in 2-3 hours. Maybe you need more Mestinon. Glad it works!

unsure81 10/02/2013

Thanks Elinora :) I think I will up the dose to the 60mg 4 times a day on the weekend and see if that helps! I hope you are doing ok - I need to catch up on your journal!!

Thinking of you.x

patmeteor 10/02/2013

For what it's worth, I'm taking 60 mg of Mestinon every three hours during the day. I tried 90 mg 4x per day when 60 mg 4x per day wasn't getting the job done, but that felt too much like a roller coaster--too much Mestinon at its peak, but then not enough before it was time for the next dose. I feel better taking less more often, although it is a pain to remember to take it that often. But if I forget and go four hours or more since the last dose, I feel like I'm playing catch-up the rest of the day. So maybe if it feels like it's wearing off too soon, you could ask your doctor about taking 30 mg every three hours instead of 60 mg 4x/day?

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