Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 I have been reading a little about how rats with a disease similar to CMT1A were given progesterone and it made their neuropathy worse. Three years ago I was pregnant and was given progesterone in pill form that I took for several months. That is when I first noticed an increase in my symptoms. Dose anyone know weather or not progesterone is considered okay for CMTers?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 , Projesterone blockers may be of help in CMT in the future as researchers gain more knowledge. This is from the STAR project and to my knowledge the most * current * information. http://www.charcot-marie-tooth.org/STAR.php Two different medications (vitamin C and a progesterone antagonist, onapristone) have already been shown to reduce PMP22 levels to a more normal expression in laboratory models of CMT1A. Neither has been validated in clinical trials in humans, although trials of vitamin C are underway in several European countries and in the United States (the US trial is funded by the CMTA in partnership with the MDA). The progesterone antagonist (onapristone) used to treat CMT1A in laboratory models isn't suitable because of its toxicity in humans. So for now Onapristone is not a good thing. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 To all all women with known and possible CMT: I would not take progesterone or depro for any reason. I had a rapid progression of CMT symtoms after taking oral depro after a few days. I was unable to walk due to extreme weakness. I had bad feet but not untill I took depro did I have the issues that began and lead to my diagnois of CMT. I do not understand why progesterone is not on the list of drugs to stay away from? But none the less I would not risk such a negative turn in the course of CMT. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Interesting discussion on Progesterone. I had an interesting experience with it, but not CMT related. I took the injectable depo Provera which is used for birth control after my last son was born in 1998. Effective birth control with one simple injection every 3 months and NO PERIODS (sorry guys, but that's huge). I started having more frequent migraines (had always had them, but mild, infrequent and easy to control). The migraines not only became more frequent but more intense and harder to get under control. At one point I remember lying in a dark room finding it excruciatingly painful to form thoughts and impossible to give voice to them. My doc said, " you know, headaches are on the list of adverse effects for depo " , no, I didn't know. I stopped the shots. Bummer, really loved the other side effect. It took almost a year to clear the depo from my system and over that year the headaches gradually got better. I can't say that I found any change in my numbness or neuropathies. Though having 3 under 3 at that time, who knows. I didn't know which way was up. Holli > > Gretchen, > > I am taking progesterone since past 7 months. This recent discussion in about HRT and CMT has scared me like anything!! Doctors here don't know much about CMT...moreover the conditions under which I m taking progesterone itself are ambiguous...my doctor says I am a very mild case ( of what, I have no clue!). > > Brr... Should I continue with the medication? I've reported about the study to my doctor...waiting to hear from her. > > Btw, just to share and feel good and hope to make you smile...I am learning dance these days and it's amazing!! > > Cheers > Reema > > Non-text portions of this message have been removed] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 I hadn't even thought about my BC (Mirena). So I looked it up to see what type of hormone its uses and low and belhold it is a low level progestin. I have decided to have it removed because low level or not I am not willing to take the chances with my CMT. I am working very hard to exercise, eat right, and take supplements to help with my CMT so I am not willing to take the chance that the progestin is doing me harm. I also gained 30lbs in the first couple months after insertion and have been unable to take it off with diet and exercise. I have been working very hard and have take 5lbs off and then just got stuck here. So hopefully now I will start dropping the weight. I know that the progesterone may or may not affect my CMT, but I know this 30lbs does! Here's to hoping it will come off easier now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Everyone: That brings up my story too with Depo Provera asside from CMT. I thought the drug would prevent me from having a period every month....but it didn't. I ended up having a little blood every day. I stopped using it after 6 months. I didn't get any other side effects neurologically though. Presently, I am on an IUD and it is great....no problems. Marin Quote Link to comment Share on other sites More sharing options...
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