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Mestinon (myasthenia) and erectile problems

george7222
1 post
Jun 27, 2009
4:45 PM 		Hello All,

Warning: this post contains “Adult Themes”.

I'm trying to get some information out there into cyberspace - I've posted this in a couple of different forums. This is a problem which I cannot find documented anywhere - I'm hoping writing about it will encourage people to talk about it or investigate it. It is a rather unpleasant subject, and I have never discussed it with anyone.

I'm a 33 year old male, and I've had MG for 15 years. I have been on varying doses of Mestinon for all of that time, and I've been on azathioprine for 13 years. I did have plasmapheresis and Intragam earlier on, but not in the last ten years. I had a thymectomy for a thymoma at the start. On the bright side, I'm doing well. Really no problems except some ongoing mild facial weakness.

In my opinion, Mestinon causes erectile difficulty. Impotence is probably too strong a word – it just makes make things more difficult. I have found that mestinon causes some problems attaining and maintaining an erection.

Getting an erection apparently involves changes in blood vessels of the front bottom, under the influence of the sympathetic and parasympathetic nervous system. Mestinon, as a side effect, activates muscarinic receptors in the body (part of the parasympathetic system), so it makes sense that this would alter the normal processes in some way.

I can’t think of a reason why Azathioprine would be causing the trouble, and I don’t think I’ve got any relevant psychological problems.

In my experience, things work somewhat better when my Mestinon dose has worn off (late at night).

Hopefully someone will see this post and do some proper research in this area.
alice
386 posts
Jun 29, 2009
4:12 AM 		Dear George,

your line of reasoning makes perfect sense, although I have to admit that I never thought about this before.

if your MG is overall well controlled and it is not too risky to skip a few doses of mestinon (preferably with your neurologist's approval), I would suggest trying to see what happens off mestinon.

as the best way to see if a certain medication or agent is causing a certain effect, is by using the Koch postulate-which is-seeing the effect when the agent is present, seeing its dissapearance or improvement once the agent is removed, and then seeing the same effect when that agent is re-introduced.

alice.
rachel73
109 posts
Jun 29, 2009
5:26 AM 		Hi George,

Im not a bloke obviously!

One thing I will say having been through it with a partner is the more apprehensive you get about not being able to perform the worse it gets. This can turn a one time performance issue into a bigger problem. Eventually leading to you avoiding intimate situations, which then leads to a whole host of other issues from your partner!!

I understand that it maybe the medication, which Alice has backed up. Its also great that you know that things work when the mestinon is not at its highest concentration in your body. So thats kind of good news.

The main thing Im trying to say is in this ramble! Try not to get stressed about it, which is easy for me to say and go with the flow. As you said it doesn't seem to be any psychological issues causing the problem and we know it still works!

As Alice said speak to your neuro

Rach
dpeterd
10 posts
Jun 30, 2009
7:11 AM 		Hi George,
Excuse the pun, but thank you for raising the issue.
I have certainly noticed a difference in maintaining an erection since taking Mestinon. I don't think it is an MG issue as I had no particular problems before the diagnosis,only since taking the Mestinon. So like you I would be glad of any advice on the issue.
Peter
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Peter Davies
Bridgend, South Wales
george7222
4 posts
Jul 01, 2009
4:16 AM 		If this is a common problem, our doctors should be mentioning it as a side a effect when they prescribe Mestinon, and it should be listed as a common side effect in the Mestinon product information. Currently neither of these things are happening, as far as I know.

Patients should at least be warned, so they can at least anticipate things going wrong and have an understanding of what the problem is if something goes wrong, rather than worrying themselves to death about it (as I probably have).
dpeterd
11 posts
Jul 02, 2009
5:31 AM 		Hi George,
I have scoured the internet and can't find this listed as a side effect anywhere, but it is always possibe that whilst this may not be a listed side effect, as our bodies react in different ways, it may be a problem with the few rather than the many. Looking through the information on Mestinon, it is mainly pyridostigmine bromide and whilst not being an expert, I wonder if the bromide content has an effect on some more than others. I would be nice to hear if other are affected.
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Peter Davies
Bridgend, South Wales
alice
399 posts
Jul 02, 2009
9:42 AM 		Dear George,

from my experience, many patients and physicians don't feel comfortable discussing those issues, and that may well be the reason that it is underestimated and not adressed by neurologists of the drug company.

one "highly experienced" patient that I met in the early days of my illness, used to say to me, that the "myasthenia book" has not been written yet, as there are so many seemingly obscure symptoms and medication side-effects that are not described or acknowledged by the "medical comunity", but are well described by patients.

at that time it was hard for me as a physician, to accept that, but the more I learn about this illness from patients, I realize that there was quite a lot in what he said.

I think that by raising this topic, if indeed others have similar effects, you have done a great service to future patients. and it would be good to find a way to assess the true extent of this problem. maybe an internet forum is not the best place.

alice
mrloz
100 posts
Jul 03, 2009
12:26 AM 		Hi George, I think you have found the answer yourself really- try not to take your mestinon within the three hours before intimacy. I take mine in the mornings anyway so if called upon to perform in the evening the dose is metabolised. If you really have to take mestinon thoughout the day, why not talk to your doctor about Viagra? Although many people laugh about this sort of thing we men know how important it is so it is worth getting it right! Very best of luck!
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Laurence in London