Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 hey all i just did a " search " on this site for MESTINON and didn't turn up anything. does anybody have any experience with this Rx? i see some of you talking about growth hormone deficiency being treated directly w/ GH. this drug is supposed to increase GH indirectly....by blocking the over production of another hormone that has been ID'd in CFS'ers. anybody tried it? thanks, bill ps - if this hasn't already been a topic on this board, i can point you to the study done at Ohio State, i believe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Hi Bill. We're not ignoring you. I just haven't heard of the drug before. It sounds interesting though. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Bill, A bit late with the reply but yes, my doctor is trialling Mestinon to raise GH levels(after reading the FM study). I just started it a week ago, so will update if any success. Apparently some of his other patients have shown improvement from it, but early days yet. mestinon > hey all > > i just did a " search " on this site for MESTINON and didn't turn up > anything. does anybody have any experience with this Rx? > > i see some of you talking about growth hormone deficiency being > treated directly w/ GH. this drug is supposed to increase GH > indirectly....by blocking the over production of another hormone that > has been ID'd in CFS'ers. > > anybody tried it? > > thanks, > bill > > ps - if this hasn't already been a topic on this board, i can point > you to the study done at Ohio State, i believe > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 paul thanks for the reply. it's funny because i was just about to post the question again. i would love to know if you get any benefit from this treatment. did your DR do any test to find out if you have a GH deficiency? thanks bill > Bill, > > A bit late with the reply but yes, my doctor is trialling Mestinon to raise > GH levels(after reading the FM study). I just started it a week ago, so > will update if any success. Apparently some of his other patients have > shown improvement from it, but early days yet. > > > > > mestinon > > > > hey all > > > > i just did a " search " on this site for MESTINON and didn't turn up > > anything. does anybody have any experience with this Rx? > > > > i see some of you talking about growth hormone deficiency being > > treated directly w/ GH. this drug is supposed to increase GH > > indirectly....by blocking the over production of another hormone that > > has been ID'd in CFS'ers. > > > > anybody tried it? > > > > thanks, > > bill > > > > ps - if this hasn't already been a topic on this board, i can point > > you to the study done at Ohio State, i believe > > > > > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 , I would be very careful with the Mestinon. I took it in 1998 for about 6 months and feel it had a very minor positive affect but not enough benefit to continue it's use beyon a 4-6 month trial. I have recently read that Mestinon weakens the blood-brain barrier and makes it easier for viruses, bacteria, etc. to invade the CNS. Steve B. >From: " " <pdunstan@...> >Reply- >< > >Subject: Re: mestinon >Date: Thu, 10 Oct 2002 20:39:21 +1000 > >Bill, > >A bit late with the reply but yes, my doctor is trialling Mestinon to raise >GH levels(after reading the FM study). I just started it a week ago, so >will update if any success. Apparently some of his other patients have >shown improvement from it, but early days yet. > > > > > mestinon > > > > hey all > > > > i just did a " search " on this site for MESTINON and didn't turn up > > anything. does anybody have any experience with this Rx? > > > > i see some of you talking about growth hormone deficiency being > > treated directly w/ GH. this drug is supposed to increase GH > > indirectly....by blocking the over production of another hormone that > > has been ID'd in CFS'ers. > > > > anybody tried it? > > > > thanks, > > bill > > > > ps - if this hasn't already been a topic on this board, i can point > > you to the study done at Ohio State, i believe > > > > > > > > This list is intended for patients to share personal experiences with >each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2002 Report Share Posted October 12, 2002 if mestinon weakens the BBB, then that is a huge draw back in my opinion. especially with all the neurological symptoms many of us have. bill > , > > I would be very careful with the Mestinon. I took it in 1998 for about 6 > months and feel it had a very minor positive affect but not enough benefit > to continue it's use beyon a 4-6 month trial. I have recently read that > Mestinon weakens the blood-brain barrier and makes it easier for viruses, > bacteria, etc. to invade the CNS. Steve B. > > > >From: " " <pdunstan@i...> > >Reply-@y... > ><@y...> > >Subject: Re: mestinon > >Date: Thu, 10 Oct 2002 20:39:21 +1000 > > > >Bill, > > > >A bit late with the reply but yes, my doctor is trialling Mestinon to raise > >GH levels(after reading the FM study). I just started it a week ago, so > >will update if any success. Apparently some of his other patients have > >shown improvement from it, but early days yet. > > > > > > > > > > mestinon > > > > > > > hey all > > > > > > i just did a " search " on this site for MESTINON and didn't turn up > > > anything. does anybody have any experience with this Rx? > > > > > > i see some of you talking about growth hormone deficiency being > > > treated directly w/ GH. this drug is supposed to increase GH > > > indirectly....by blocking the over production of another hormone that > > > has been ID'd in CFS'ers. > > > > > > anybody tried it? > > > > > > thanks, > > > bill > > > > > > ps - if this hasn't already been a topic on this board, i can point > > > you to the study done at Ohio State, i believe > > > > > > > > > > > > This list is intended for patients to share personal experiences with > >each > >other, not to give medical advice. If you are interested in any treatment > >discussed here, please consult your doctor. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Steve, Thanks for the warning on Mestinon. After reading your message I checked the CFS Research list archives and there was an even more concerning post regarding Mestinon and GWI. (Pasted the post below). (From on cfs_research) Is anyone else but me aware that pyridostigmine is a drug that they're blaming as being one of the likely CAUSES of Gulf War Illness?(This was even in testimony before Congress: http://veterans.house.gov/hearings/schedule106/nov99/11-16-99/evans.htm ) Why on earth would something that is being considered a cause of Gulf War Illness be recommended for women who have Fibromyalgia, given the similarities between the illnesses. I'd bet that if there were follow-up studies of these women that participated in this research, they would be found to have eventually gotten much worse in the long run. The problems with so many of these studies are that they are short term studies, and they don't take any other studies into account. I don't doubt that growth hormone secretion is impaired in FM. But I do doubt that pyridostigmine is going to be the magic drug to alleviate the problem, much like the drugs that are currently used to treat Parkinson's are in the long run making the disease progress faster, even though the initial benefit of the drugs seems to be positive. lindaj@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Hi All, It is interesting to read other people have been taking Mestinon, too. I saw a new neurologist last Autumn and he was the first one ever to really _try_ anything for my SMA. (Up to so far, all neurologists have just said there's nothing to be done, use your wheelchair, get PT, use your PCA.) This one gave me a prescription for Mestinon. I used it for a week or so but did not notice much difference. Except the increased bowel movement which I didn't like. So I quit. So that was my experience. Taya MESTINON Geeze I thought I was the only 1 who took Mestinon. I take 30mg every 4 hrs while awake. I have 2 problems with that dose when I go to the hospital, the tablets come in 60mg . Sometimes the nurses will bring the whole tablet and 2nd they try to give it to me every 4 hrs even during sleep. If I get to much I get the twitches especially in the face. It does give the extra energy I need. I can tell when it's wearing off or missed a dose. I can be starting to run down and get the quivers inside and take it and my stamina has increased greatly. I've taken it for nearly 15 yrs I think and it's still working for me. It doesn't increase strength just stamina or energy so you're not so tired. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Taya, what SMA type are you? Mestinon will cause diaherrah aka " the runs " if you're taking too much. Were you not told to ease into it? My neurologist said to start off slowly and work my way up so that I could find the right dose that would give me more benefit with little or no side effect. I started out taking one half pill (60mg tablets cut in two halves) on day 1. Day 2 - 30mg when I woke up then 8hr later the 2nd 30mg. Day 3 - 30mg in the morn, 30mg 6hrs later and 30mg 6hrs. Day 4 - one whole 60mg pill when I woke up. Day 5 - same as day 2 except whole pills. Day 6 - same as day 3 except whole pills. I showed signs of the runs on day 4, so I backed off to day 3 and stayed that way for about three weeks until the runs caught up to me and then settled back to a day 2 routine ever since. On busy days I will do a day 3 or day 4 depending how far from home I plan on being. Never do I go beyond 60mg a day else risk the runs. Being a type 2 or 1 may be similar in affectiveness vs a type 3 which may be unnoticeable benefit wise yet the runs attack everyone who over does the dosage; body dependant for overdose not pill dependant. If twitching occurs it's also a sign of too much Mestinon. On 2005.03.10 14:45, Taija Heinonen KOTI wrote: > Hi All, > > It is interesting to read other people have been taking Mestinon, too. I > saw a new neurologist last Autumn and he was the first one ever to really > _try_ anything for my SMA. (Up to so far, all neurologists have just said > there's nothing to be done, use your wheelchair, get PT, use your PCA.) > This one gave me a prescription for Mestinon. I used it for a week or so > but did not notice much difference. Except the increased bowel movement > which I didn't like. So I quit. > > So that was my experience. > > Taya > > MESTINON > > > Geeze I thought I was the only 1 who took Mestinon. I take 30mg every 4 > hrs while awake. I have 2 problems with that dose when I go to the > hospital, the tablets come in 60mg . Sometimes the nurses will bring the > whole tablet and 2nd they try to give it to me every 4 hrs even during > sleep. If I get to much I get the twitches especially in the face. > It does give the extra energy I need. I can tell when it's wearing off > or missed a dose. I can be starting to run down and get the quivers > inside and take it and my stamina has increased greatly. I've taken it > for nearly 15 yrs I think and it's still working for me. It doesn't > increase strength just stamina or energy so you're not so tired. > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.