[AnnieB3]

I've posted these two articles before, where it basically says that Mestinon might help patients who have ischemia, a lowered or inadequate blood supply in an area of the body.

http://www.ncbi.nlm.nih.gov/pubmed/17397949

http://www.ncbi.nlm.nih.gov/pubmed/15367503

But silly me didn't take that one step further to figure out why. I was doing some research on blood thinners, platelets, etc. and came upon this info.

http://www.ncbi.nlm.nih.gov/pubmed/19694313

http://www.mjpath.org.my/2009.1/07pyridostigmine.pdf

So, what Mestinon can do is act as a blood thinner. And, if you stop taking it for any extended period of time, it is possible that your blood can become thicker due to more platelet aggregation (clotting). Whether that makes you more prone to clots is hard to say. But like any other drug, if you stop taking it, symptoms can become more pronounced afterwards. Kind of like the new warnings about stopping Plavix and being more prone to a stroke or heart attack.

Those patients with CMS's with too much acetylcholine who take Quinidine can have the opposite effect. Taking it may cause more clotting.

You'd think that would be an important little "factoid" to put on the prescribing information of the drug.

I take baby aspirin daily and the combo of those two could cause bleeding. Very interesting since I had a little biopsy in 2004 that lead to hemorrhaging. They couldn't find any reason for it. Who knows if that was the cause or not.

So if you have any clotting disorder like APS (antiphospholipid antibody syndrome) or lupus clotting issues or any peripheral artery disease or any other cardiovascular concern, please bring this up to the appropriate doctor!

http://www.valeant.com/fileRepositor...g_PI_May01.pdf

Nope, can't find any reference to it. Keep up the good work, Valeant.

One more reason to be well-informed and to keep your doctors up-to-date on information.

Annie

[rach73]

Hi Annie,

Thanks for that.

Many people on the DINET forum - people with postural orthostatic intolerance syndrome take mestinon as the Mayo clinic found it raised blood pressure on standing. Due to this my hospital consultant would like me to take Mestinon 3 times a day.

Unfortunately I just can't tolerate the stuff due to the GI issues. I take only when absolutely necessary.

I always wondered why Mestinon had that effect on people with POTS or NMH. This explains it a bit more.

Thanks for posting

Rach

[AnnieB3]

Rach, I'm still not sure that thinning the blood would be what would raise blood pressure upon standing. I would think the opposite would happen, since people with ischemia often have higher blood pressure. Obviously, Mestinon has more effects on the body that what has been elucidated in the prescribing information or on websites like MGFA.

If someone goes off of Mestinon and does have any clotting/platelet issues, it could be very dangerous for them. It might effect the Prothrombin Time or INR.

http://www.medpagetoday.com/Cardiolo...ertension/2676

They noted that the greatest increase was in diastolic BP, not systolic (upper number). I'll have to research this some more.

[rach73]

Hi Annie,

I am wondering if by thinning the blood it increases the volume of blood in the system? Some drs believe that some people with POTS have low blood volume. As a result we have to also increase our fluids and salt and take florinef.

Its certainly being used off label for a lot of different illnesses. I have heard of M.E patients being given it with good results.

Thanks again Annie

Rach

[Tbarney]

I have been decreasing my Mestinon since this spring at my Neuro's request. I have also been having high platelet counts and they don't know why. Wonder if there is a relation to these two?

[AnnieB3]

TBarney, I rather doubt it but who knows. You can have a lot of platelets and not have them "clump" together, which they would do if they are clotting more. It sounds like your doctors are on top of all this anyway.