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Old 06-24-2010, 07:21 AM #1
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Default Mestinon

I going to start talking this medication. I dont want to but Im done fighting with the little energy I have to find a way around it, especially since my neurologist wont really talk to me for more than 5 mins.

I want to know if anyone has been on it a while. I want to know what kind of side effects to watch for. Has anyone had children while they were on it? Im concerned mostly about long term effects and what will happen when I have children.

Thank you for your support and understanding. I need it today.
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Old 06-24-2010, 08:00 AM #2
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I have been on it for 10 years (various levels depending on my mg issues at the time) and the one side affect I really watch out for is gastro-intestional upset. I find if I have to increase my dosage, it is better to take smaller doses closer together rather than one large dose at 4 hours intervals. Also, I always try to eat something small or drink a glass of milk when I take the mestinon to try and settle my stomach.

I'm not sure of how it might affect having children, but based on the fact this is such a short-acting medication and is completely out of your system after about 4-5 hours, I'm not sure how it could affect pregnancy. I'm sure there are others on this site that can better address that issue than me.

Good luck and I hope the mestinon works for you.
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Old 06-24-2010, 08:21 AM #3
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Hope,

You sound very much like I did 1 year ago. I don't like to take medication of any kind. Have always thought my body was better off without 'chemicals'.

Anyway, I was told to start Mestinon at 30 mg every 4 'waking' hours. So I filled the 'script' and left the bottle on the shelf for awhile. But there was no change in how I felt!! (lol)

Finally I dicided I would take 15 mg every 4 hours - - nice improvement, but not 'normal'.
So, after a couple of months, I began 15 every 3 hours...better. Then 30 mg every 4 hours, and a few months ago - I swallowed my first 60 mg in one dose!!

Long story short, I am very comfortable now with Mestinon - what it does for me, how much and when to take etc. Yesterday was a 150 mg day (and I played 18 holes of golf in pretty hot weather!) Today, I'm tired and a little 'heavy' and was anxious to take my first pill of the day. Tomorrow I may not have to take a pill until after shower and breakfast. Who knows....and why worry about it.

Hope, you'll find the right combination of docs, meds, and activity. With my neuro's guidance, I take a 'baseline' dosage every day and then a 'booster' dose depending on the activity (like golf) I do. This seems to work best for me - but my neuro and I have worked together to get to this solution.

Taking Mestinon isn't 'giving in' to your MG, it's taking your life back from MG.

As for side effects, I have none except for occasional eye twitching. I can feel when it kicks in (in the beginning this feeling scared me ... but now I welcome it). I'm not as aware of it wearing off - that is until my coffee cup gets heavy!!

As for having kids? Ask your doc. While every case is unique, many women with MG have kids.

Sue
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Old 06-24-2010, 10:08 AM #4
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I was reluctant to take it at first as well. It helps sooo much though. I started out taking 1 a day just to see what kind of impact it had. I was having problems with chewing and it helped within a few minutes. The only side effect that I have had from it (I've been taking it for almost 18 months) was an upset stomach, but that was only for the first few months. Just be sure to eat a little before taking it.

I'm not sure how it effects pregnancy. I know there are some on here that have had children since being diagnosed with MG.

I'm sorry you have a neuro that is hard to talk to. I understand completely! It is his job to help you AND listen/answer your questions! When I think of something to ask I alway write it down and carry it with me to my appointments, and keep asking until he gives an answer, haha. If you really aren't happy with him maybe you can try getting another one. I only have insurance through a charity hospital so I can't change doctors. There are some MG specialist spread out here and there at MDA hospitals, you can get MDA's main phone number from their website and call to see if there is a specialist in you area. I went to one for a second opinion and they are great!!

Hope you are are having a good day.


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Old 06-24-2010, 02:05 PM #5
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Thank you so much for your replies!
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Old 06-25-2010, 08:41 AM #6
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I'm still kind of new to this myself, but my understanding of Mestinon is this: it is "boosting" a chemical that your body needs. With MG, weakness is caused because the body is producing antibodies which block the reception of acetylcholine (the chemical that stimulates muscles).

Mestinon is essentially acetylcholine, and by taking it, you are giving your body a "boost" that helps get more ACh to those receptors. Believe me, you will NEVER be able to take more than you need, because your body really doesn't want an excess amount of ACh - if you get too much, you will feel really bad!

My doctor had me start off with a small dosage, gradually increasing until I found the "right" amount for me. In my case, my bloodwork didn't show that I had any antibodies, so I think my doctor thought the meds wouldn't help. However, I was able to take 30mg w/o any effect whatsoever; 60mg with a slight improvement; 90mg with a noticable improvement; and 120mg with a "This is WAY too much" effect.

I got an official diagnosis of MG - based on my response to the medication and a Tensilon test - last Friday. Since then, we have been experimenting with dosages. I am currently taking a timed-release tablet at night, and 90mg every 4 hours when awake. So far, that seems to be what works for me.

I don't think that taking this while trying to get pregnant or while being pregnant should be a problem - goodness knows you want to keep your energy levels up during pregnancy! However, I am not a medical professional - be sure and check with your doctor to see what he/she recommends.

You might also want to get tested for Celiac Disease and/or look into following a gluten-free diet. If you have issues with gluten, your intestines won't absorb all of the nutrients that you eat, and that can mean the difference between a healthy pregnancy and one that really saps you of all nutrition (your body will transfer as much as it needs to a baby, at your expense). Many women with undiagnosed gluten issues (whether they test positive for CD or not) have problems with infertility - and many OB/GYNs are unaware of this fact.

In many cases, once a woman with gluten issues follows a GF diet for a year or two, their intestines have healed sufficiently to allow their body to become pregnant - apparently our bodies are "smart" enough to not allow us to get pregnant if we can't retain enough nourishment to sustain a pregnancy! For more information about CD/gluten issues, go to www.celiac.com - it's one of the best sites out there related to this subject.

Some people with MG also have CD, and even those who don't sometimes find that they benefit from a GF diet. It's fairly easy to follow; there are LOTS of GF foods available in your local grocery store (and as more people start becoming aware of how common CD is, there will be even more choices available in the future); and many restaurants have GF menus available now. You may have a Gluten Intolerance Group (GIG) chapter near you that can give you more information as well.
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Old 06-29-2010, 10:31 AM #7
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I just wanted to add my two cents into this thread. Mestinon is in a class of drugs called ACE inhibitors Where ACE stands for AcetylCholine Esterase (in biological systems "Esterase" means to degrade/breakdown" and therefore ACE is an antibody that breaks down Acetylcholine) And as we know Acetylcholine is a neurotransmitter for our muscles. So ACE inhibitors like mestinon help prevent the breakdown of acetylcholine and allow it to remain in the neuromuscular juction to allow for "normal" firing of muscles.

There have been a few mouse studies that show that mestinon can permanently change receptors "in Mice" and this has never been observed in humans.

It is not recomended in pregnant women but it has been used and documented, "keep in mind that no drug companies will ever directly perform clinical dosing on pregnant women" so all data is based on singular case studies and is highly individual. Use while pregnant should be done only under direct medical consultation... keep in mind that there are alternatives for treatment while pregnant such as IVIg (Aso used for women who have spontaneous abortions).

I wish you the best of luck in your choice of treatment. I use mestinon and it works well for me but I do get stomach issues. Also keeping it circulating in my system is hard so I do get dips in strength. It is a great drug for those of us with steroid resistant MG
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Old 06-30-2010, 09:49 AM #8
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Mestinon IS NOT an ACE inhibitor (angiotensin-converting enzyme inhibitors)! ACE inhibitors are given as blood-pressure medications. Mestinon is an AChE inhibitor ( http://en.wikipedia.org/wiki/Acetylc...rase_inhibitor)....
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Old 06-30-2010, 06:52 PM #9
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I just want to add my experience with Mestinon. It doesn't bother my stomach at all (I take 60mg every three hours), even on an empty stomach. It makes my mouth water a bit, but not to a bothersome degree. If I'm not doing much, I sometimes have muscle twitches (I should probably take it less frequently on an inactive day). These are very small prices to pay for the benefit I derive! No medicine is without risk, but not treating a disease is also risky. It's a matter of balancing risks.

There's a website you can consult that gathers patient experiences with different drugs: http://www.askapatient.com/rateyourmedicine.htm . Just don't put _too_ much stock in it. People often wrongly assume some symptom is a side-effect of the drug when it's unrelated--and check dosage and reason for taking the drug. Still, it can be useful, taken moderately with a grain of salt.

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Old 06-30-2010, 07:04 PM #10
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I've been on Mestinon for about 8 years now, when I first started I was on 4 x 60mg and 1 timespan, the timespan did make me rather sick in the mornings, but let me function better. Now I'm on 2 x 60 mg a day. I also have increased salivation, but the effects of the mestinon are better for me than not being on them.

Here is a link to Mestinon that give a good explanation of what it is, and a bit about it.
http://www.mestinon.com/index.jspf
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