goldicedance

Mestinon

14 posts in this topic

Have any of my POTs friends embarked on trying Mestinon? If so, what have been the results? I have now been on it for several months and am doing pretty much ok--not worse, sometimes better, and sometimes fair. :D

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still trying to find doc willing to give it a try.

best of luck

blackwolf

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Have any of my POTs friends embarked on trying Mestinon? If so, what have been the results?  I have now been on it for several months and am doing pretty much ok--not worse, sometimes better, and sometimes fair.  :D

Hi Goldidance,

I was prescribed the medicine yesterday. I have not started it yet. May I ask what shape you were in before starting it? Were you able to work? What were your most bothersome symptoms and which of those has it helped? Have you noticed any side effects?

Thanks!

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Goldicedance,

I'm using the mestinon and it really helps me. For me it's an improvement. It's not that my walking is any better, or my energy, but it's keeping me much warmer, which is GREAT, it's improved my dizzyness so that I can sit in the car without having the feeling of falling out everytime (in corners or roundabouts I mean), drive my electrical cart and, I don't know where from, but it improved my sleeping. And that's REALLY nice as well.

The only thing is, that my body get's used to the dosage in 6-8 weeks. That means dizzyness, bad sleeping, feeling very cold again. So I have to increase them every now and then. But that goes for me, it doesn't have to go for you as well.

Lisa, when I saw Goldicedance post about this the first time, I thought it would do wonders for me and I already saw myself working again. That was a (big) mistake and made me feel VERY disappointed. So, don't set your hope too high, because I don't want you to be this disappointed.

Side effects: I HAVE to use something to protect my stomach.

Hope this helps you Lisa, wish you good luck!!!

Corina

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Dr Grubb prescribed it to me in April, but I havent had the guts to try it yet,,,,

I'm waiting until I go back to Mayo this week and see Dr Low...then I will give it a shot.

Dr Grubb has great hopes it will help me to even things out. We shall see :D

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Lisa, when I saw Goldicedance post about this the first time, I thought it would do wonders for me and I already saw myself working again. That was a (big) mistake and made me feel VERY disappointed. So, don't set your hope too high, because I don't want you to be this disappointed.

Corina

Thanks Corina.....I should know better by now, I just keep hoping for the miracle cure :D

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Dr. Khurana wanted me to start on a small dose (in liquid form), which I did. I got such an unbearable headache that I couldn't wait for it to wear off and I never tried it again.

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i've been on it for almost 6 months now. i've tried a lot of the other meds and none of them have helped me like the mestinon has. mayo clinic prescribed it for me. I've had to do a lot of playing around with the dose. I had a week where I felt COMPLETELY normal and then for some reason i kind of went backwards again and havent had that really really good feeling again but I'm definitely way better than i was. I dealt with nausea every day all day and that's pretty much gone. i was having major trouble with my walking and that's improved big time. I don't feel like passing out nearly as often. i still have that yucky feeling at some point of the day everyday and go through weekly bouts where things just aren't right but at least some things have gotten better. I wouldn't be afraid to try it. The only side effects i had were muscle twitches which have gotten better with time. Just gotta make sure you eat when you take the pills.

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Hi -

I posted the following a few days ago under the old mestinon thread not realizing how very old it was (someone had "resurrected" it)...

I too am a new partaker of the mestinon, although it was NOT good for me on its own. It was part of the med trials I participated in at Vanderbilt & did well for me in combo with inderal (beta blocker). It wasn't part of the trial but I'm also on midodrine. (more info in my "Vanderbilt Chronicles" post...er, book) Other stuff too but those are the primary HR/BP meds for daytime use. It's not an immediate fix at all but the small doses of mestinon (30mg TID) & inderal (10mg TID) do seem to be an improvement for me & the mestinon is also helping my gastroparesis...yippee! I too have already gotten many a look about being on the mestinon without having MG, but no stranger than all the looks over the years about all the other "alternative" med uses (i.e. concerta not for ADHD, lexapro/celexa not for depression, etc.)

i also like the fact that even though the mestinon is new for autonomic uses it's not a new drug in and of itself...

:-)melissa

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Dr Grubb prescribed it to me in April, but I havent had the guts to try it yet,,,,

I'm waiting until I go back to Mayo this week and see Dr Low...then I will give it a shot.

Dr Grubb has great hopes it will help me to even things out. We shall see :blink:

Dr. Low is a great believer in Mestinon so be prepared. I don't think mestinon is the end all but I do believe it helps. The advantages of mestinon--no chills like on midodrine and no fear about laying down like with midodrine. I think Dr. Low has impressed upon other docs in the field--Dr. Grubb, Cleveland Clinic, WVUH, Dr. Khurana--that there is a place for mestinon in helping to treat POTS. It is not the only answer but it is part of the complex solution. As we all know, our needs vary greatly, our treatments vary greatly, and our responses vary greatly. We also know that our bodies, for whatever reason, get used to medications. When I took midodrine regularly, my doctor (who was one of the researchers in the clinical trials for midodrine) used to tell me that it was a good idea to take a midodrine vacation every now and then.

I do think that it is worth giving it a shot because you just never know. It is fairly short acting so I don't think you have to be wary about long-term affects. It also negates the need for prunes if you get my drift.

Corina--I have had good days and bad days with/without midodrine. The February through April I was in pretty bad shape--dehydrated and so forth. I then took retirement since I could no longer work on any regular or consistent basis.

My primary physician has been wonderfully supportive of me getting disability (short term -- up to 3 years). The company, one of the biggies, has been very fair. I did include several articles with my application (Mayo Clinic - quality of lfe; and other background pieces.

That's it for now.

Lois

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do any of you know if mestinon raises bp, and how long did it take to feel any benefit? and what dose did you start at and how often do you increase? thanks,

radha

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mestinon, for some, has been found to raise BP when standing/upright but not when laying down...for some reason i'm not coming across the link for the actual article re: the original OI research with it, but here's a short summary i found that gives the general idea:

ANA: Drug helps to relieve orthostatic hypotension

Did not raise BP when lying down

By Kylie Taggart

TORONTO ? A study has found pyridostigmine (Mestinon) effective in alleviating orthostatic hypotension, without causing blood pressure to soar when the patient is lying down. Pyridostigmine is an acetylcholinesterase inhibitor which has been used for years to treat myasthenia gravis.

"This is a significant step forward for these patients. This would be a good drug to provide as the first line of treatment," Dr. Phillip Low, lead investigator and neurologist at the Mayo Clinic in Rochester, Minn., told the annual meeting here.

Previously only one medication, midodrine (Amatine), had been shown to be effective in the treatment of orthostatic hypotension, but it has the unwanted side-effect of increasing blood pressure when the patient is lying down. Only low doses of midodrine do not cause hypertension while patients are lying down.

The six-day trial involved 58 patients with orthostatic hypotension from a neurological cause. All patients were in hospital throughout the trial. During days two to five of the trial, patients were cycled through one of four treatments in a randomized fashion: pyridostigmine 60 mg; pyridostigmine 60 mg and midodrine 2.5 mg; pyridostigmine 60 mg and midodrine 5 mg; and placebo. Blood pressure readings were taken immediately before treatment and one hour post-treatment.

Standing blood pressure was significantly improved for patients on pyridostigmine compared with those on placebo. Patients randomized to pyridostigmine plus low-dose midodrine had an even better control of standing blood pressure compared with placebo. Most importantly, there was no significant difference between treatments in systolic or diastolic blood pressures while patients were lying down.

A followup study was also conducted at the clinic. Patients were followed for an average of 19.5 months after the initial study period. Twenty-four of 32 patients reported either good or excellent results from daily pyridostigmine treatment.

"It is not a miracle drug," warned Dr. Low during his presentation. "It depends on the status of autonomic failure," he said.

in terms of how long it takes it to work, it's pretty fast-acting. one's body may get more "settled in" with it after a few days, weeks, etc, but there is some effect immediately, i.e. within a few hours, for some. the med trials i was in at Vanderbilt could only test meds that worked in this way, so mestinon is one that is, generally speaking, in & out of your system fairly quickly.

re: dosing, i started on & am still on 30mg 3-4 times a day. my body tends to like small doses & there's no plan for me to increase the dose. i know others here on on larger amounts. i'm also on it in combo with other meds, as i actually didn't do so great on it alone. (in the med trial it made me pass out when i took only the mestinon but i did relatively well with it in combo with a beta blocker in a VERY small dose). i take it on the same dosing schedule as inderal/propranolol (10mg) and midodrine (10mg). the three combined seem to keep my BP/HR the most stable these days.

hope this helps,

:-)melissa

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do you think it would raise bp if just sitting up in bed, or on the sofa with legs elevated? i cant stand at all, thanks

radha

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there's no way to know as everyone is different, but the combo of mesitinon, inderal, & mododrine has helped me a lot with my being able to tolerate sitting...much more than it has helped with standing actually...i can't really speak to the mestinon on its own though b/c it actually made me pass out on its own...or rather it didn't keep me from passing out...same with the inderal. honestly though, there's no way to ever have a guarantee for anyone as our bodies and conditions are all so different. i could hardly sit much at all though before this recent med combo, so something about it is doing me some good. good luck!

:-)melissa

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