Has your Mestinon become less effective?

Ro from Vermont · 08-19-2008, 05:43 AM

Lois,
Are you on brand Mestinon or generic? People who have been diagnosed forever, like us, only had BRAND Mestinon for decades. Then the generic came out and I just do NOT tolerate it at all.
My brand Mestinon is 60 mg every 3 hours with a Timespan at bedtime. When I was on generic, I needed at MUCH higher dose and it didn't last nearly as long.
I take a TON of immunosuppressants, but in 27 years my BRAND Mestinon dose had only gone from 45 mg. every 4 hours to 60mg every 3 hours. On generic, I SUDDENLY needed 90 mg. every 2.5 hours.

Was just curious.
Best wishes,
Ro

neutro · 08-20-2008, 02:51 PM

Hi Lois,
I' am reading you from France and as a frequent visitor of a forum similar to this one (http://www.myasthenie.com for those fluent in French…), I posted your question.
The first replies indeed indicated an effect similar to the one you reported.
Here in France, we have an alternate drug to Mestinon, its name is MYTELASE (ambenonium chloride) and is used for those who do not tolerate Mestinon or who have been acustomed to it.
See these 2 links for product info:
http://www.medicinenet.com/ambenonium-oral/article.htm
http://www.products.sanofi-aventis.u.../mytelase.html
I'll keep you informed of the other replies.
Maurice.

marias626 · 09-25-2008, 11:44 AM

Erin,

In case no one told you the overdose symptoms are the same as really bad generalised myasthenia or even myashtenic crises.

marias626 · 09-25-2008, 04:52 PM

I have been on 60mg of mestinon as needed every four hours for 8 years. I recently within the last year have been getting generic. I don't think the generic is as effective and it also seems to bother my stomach considerably more.

PMCPMC · 11-20-2009, 07:43 AM

Quote:

Originally Posted by snidermame

Lois, regarding:

"I'm not sure if the MG has actually gotten a little worse, or if my body has gotten adjusted to the Mestinon so that I need to keep increasing the dosage to get the same effect."

Number one, I really understand what you are saying here. I am the same way. However, I don't think I can increase my Mestinon anymore. I take 1 1/2 Mestinon tablets every 3 hours (90 mgs). If I take anymore or closer in time I get those ill effects. About my 4th year into having MG my Neurologist suggested I try taking 1 1/2 tablet every 3 hours instead of 1 every 3 hours. At first I noticed an improvement with occasional ill effects and now I think I am used to it. Originally, I started out taking 1 pill every 6 hrs or so and gradually increased the amount and decreased the time between dosages. I don't have ill effects very often anymore, but if I do, I take 1 to 2 Imodium (usually 2 does the trick) and then I am somewhat constipated for a day

Oh well

Also, I need to have food in my stomach and will eat crackers, or if too weak I will drink milk or Ensure (usually drink one Ensure a day) with my Mestinon.

I only take Mestinon. I usually take 1 1/2 pills every 3 to 4 hours depending on how I feel. I do know that REST is like medicine for me. Sometimes, if I feel extra out of breath and/or real weak and fatigued, and it is time to take another dosage, I lay down FIRST of all. Then, sometimes I take my Mestinon or wait 30 to 60 minutes (when I usually start to begin feeling better). It is sometimes too hard to swallow my pill, also. That is why I wait the 30-60 minutes.

Also, I like to exercise about 30 minutes at least every other day and that seems to help me feel better.

Hope this helps.

why do you only take mestinon ?
What method is your neuro doctor using to reduce your antibodies from occupying the receptors on you muscles?
if nothing then the sodium ions from the mestinon are having to hang saround too long and waste before the nerve signal to the muscle can be exchanged ,hence e=weakness or increased need for mestinon .I am sure some of our experts here can it explain it better than me .
What size of population does your neuro look after the less it is the less his knowledge with a 1 in every 100000 people hav=ing this condition.

healthyme · 10-15-2013, 12:15 AM

Quote:

Originally Posted by turner

I read somewhere that some people might not be making enough acytacholine, therefore they have the muscle weakness. This might be why some of use don't test positive on blood test. This is what I think my problem is, since the blood test that I had, only showed that I didn't quite have enough in the system, hence borderline, I don't even know if I have antibodies directed at the receptor sites.

Anyways I elected to change my diet and see if it helped, and it did, some people are helped with digestive enzymes so that they can make more acetacholine. (sp)

Hi Turner, can you tell me more about how did you change your diet? What do you eat more, and is that to increase the Acytacholine enzyme?

I've just had 1 eye Ptosis last week and seeing a specialist who's prescribed me with Mestinon 60mg. CT scan shows normal thymus. Blood test won't be out for another week. Specialist started me on half tablets of the Mestinon 60mg, but it didn't work at all (4 days) so yesterday I saw him again and he told me to increase to full tablet from last night onwards. I've since had 2 tablets (1 last night, 1 this morning), but I do not notice any effect at all. I'm starting to wonder if perhaps I might have other problems or maybe I might just have the same problem as you which is that my body is not making enough acetacholine enzyme? Appreciate your help me, feeling so helpless.

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