Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Thanks Gretchen! I now know that this study was done on rats and that I am human but doesn't it seem at least noteworthy that since there are no studies for humans and this rat model is the only source for evaluation, that limiting an actual supplementation a progesterone to be prudent? Thanks, Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 I second Gretchen's caution. When I met with the neurologist, she mentioned that progesterone was contra-indicated for CMT2, but I didn't ask for more info at that point. I've since moved, but I need to contact her anyway, so I'll see what I can find out. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 In a message dated 5/15/2006 10:23:05 A.M. Pacific Daylight Time, fijiwigged@... writes: Second to that, I remember that the Progesterone research had some serious concerns for CMT women in their child-bearing years. ~ Gretchen Oh wow, I had Prostaglandin gel to induce labor a few times. Good thing I didn't use it more. Thank you for the warning! Worked great had the baby in 7 hours after the gel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 , Back in 2003 or 2004 research came out of Europe about Onapristone (progesterone) experiments on rats. At that time it was looking like that may be a potential 'treatment' for CMT 1A. At last November's Conference I asked Dr. Shy whatever happened to this and he said Onapristone is toxic to the human liver. Then he added that research continues in Germany to find a synthetic substitute that would work. Search our Archives for past posts on this; also see the Onapristone Folder in our Files section. Look in our Pregnancy File for a couple of articles, one on Neuromuscular Diseases in pregnancy and pregnancies and deliveries in patients with CMT.pdf Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 okay so I'm finiding two differing oppinons on progesterone and CMT: 1. Progesterone and its metabolites promote the viability of neurons in the brain and spinal cord and Progesterone plays an important role in developmental myelination and in myelin repair, and the aging nervous system appears to remain sensitive to some of progesterone's beneficial effects. 2. Progesterone causes over expression on PMP22 therfore CMTers could benefit from progesterone blockers, i.e. Onapristone So is Progesterone bad or good? Am I just confused or is there differing oppinons?? > > , > > Back in 2003 or 2004 research came out of Europe about Onapristone (progesterone) experiments on rats. At that time it was looking like that may be a potential 'treatment' for CMT 1A. At last November's Conference I asked Dr. Shy whatever happened to this and he said Onapristone is toxic to the human liver. Then he added that research continues in Germany to find a synthetic substitute that would work. > > Search our Archives for past posts on this; also see the Onapristone Folder in our Files section. > > Look in our Pregnancy File for a couple of articles, one on Neuromuscular Diseases in pregnancy and pregnancies and deliveries in patients with CMT.pdf > > > Gretchen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Kim. Give me the spelling of Depro. Or that complete word. Can't find it on Web MD. Thank you. Patte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Thanks Kim.......... geri 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 14, 2009 Report Share Posted March 14, 2009 Deprovera standard protocal before a hysteretomy is performed is course of Deprovera.  From: Shaytomer <jjpattemye@...> Subject: Re: CMT and progesterone Date: Friday, March 13, 2009, 8:44 PM Kim. Give me the spelling of Depro. Or that complete word. Can't find it on Web MD. Thank you. Patte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Thank you Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 I take megadroxyprogesterone (provera) to bring on delayed cycles cause I have poly cystic ovarian syndrome aka PCOS. Its benefits I was told was better than the risks of not using it with no uterine shedding I'm at risk for endometrial cancer so has research shown it not a drug to be using? I have CMT 1A. I've noticed no increase of CMT with the provera use. Thanks Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Yes, that is what I was trying to get at as well. I think that it should be on the list of meds to stay away from. I really feel the pills I took made my CMT worse but at the time I thought it was the pregnancy. I would not change my decision to take it because with out taking it the pregnancy very well could have ended in miscarrage, and I'd do anything for my children, even if it means that my CMT may worsen. I did not know then that I had CMT, so I am just looking back at things now that I know and piecing it all together. > > 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 15, 2009 Report Share Posted March 15, 2009 For me, progesterone caused walking problems and weight gain. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 I have taken the Depo Provera (Medroxyprogesterone Acetate) injection on and off (mostly on) for about 15 years and have had no noticed increase in my CMT1A from it. Is there a known risk? Is this type of progesterone targeted in the progesterone antagonist trial/study? Las Vegas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Hi in Las Vegas, No, type of progesterone targeted in the progesterone antagonist trial/study is Onapristone. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Any biochem professionals out there please chime in: Firstly, I am not an alarmist - so anyone reading this must carefully consider why they are taking this drug and for how long and review with their doctor and if possible get a second opinion. Secondly, the known benefits of hormones (estrogen included) have been challenged and revised over the last 5 year as a result of the Nurse study conducted by NIH.  No one should think the use of progesterone is safe over long periods of time and even healthy or can prevent diease this has not been proven It wasn't that long ago that duel hormone replacement was viewed as safe, preventive to cardiovascular disease and would keep women thinking sharp.  proven wrong!  Women have a difficult task of choosing birth control(young ladies) and being safe and trusting our doctors. For us ladies where BC or Birth Control is not an issue- we must carefully understand why we are taking this drug and what are the know risk and unknow risk. Hormones are very complicated and confusing.  We don't pick easly topics to talk about.  Medroxyprogesterone is a progestin, and is commonly a component of hormonal contraceptives THIS IS THE DRUG MANY WOMEN TAKE  Onapristone (ZK 98.299) -is an antiprogestin.- It acts something like this picture a parking lot- with 20 open parking spaces waiting for progestin cars to park in--- but instead the Onapristione comes in and parks in those 20 spaces blocking progestin from parking.  Simple huh... so now the progestin can not park and therefore can not go to work. The study on the mice involved went like this - mice who were given progestin had rapid progression of CMT - mice that were given the antiprogestin had better nerve chemistry. Details listed below: Studies have suggested that the steroid hormone progesterone, an epigenetic regulator of gene expression, can stimulate PMP22 expression (5, 6). In accordance, daily administration of the progesterone antagonist onapristone (Schering AG) at a dose of 20 mg/kg over a period of 7 weeks has been shown to induce a 15% decrease in PMP22 mRNA in sciatic nerves in a rat model of CMT-1A. This was associated with a 1.5-fold increase in Mpz mRNA, which encodes the major structural protein of myelin. Onapristone-treated rats also maintained a significantly greater number of sciatic nerve axons and exhibited improved motor performance after 5 weeks of treatment (+65%) (7). I didn't know that depo had been black boxed(see below) and didn't know the asthenia (weakness or fatigue), In summary( http://en.wikipedia.org/wiki/Depo_Provera#Black_box_warning: Black box warning While it has long been known that Depo-Provera causes bone loss, it has recently been discovered that the osteoporotic effects of the injection grow worse the longer Depo-Provera is administered, may remain long after the injections are stopped, and may be irreversible. For this reason, on November 17, 2004 the United States Food and Drug Administration and Pfizer agreed to put a " black box warning " on Depo-Provera's label.[30] However, the World Health Organization (WHO) advises that the use of Depo-Provera should not be restricted.[31][32] It is unclear whether the bone density loss associated with Depo-Provera use is reversible, and if so, how completely. Three studies have suggested that bone loss is reversible after the discontinuation of Depo-Provera, although one notes that bone loss was not reversible in long-term users of Depo-Provera.[33][34][35] Other studies have suggested that the effect of Depo-Provera use on post-menopausal bone density is minimal,[36] perhaps because Depo users experience less bone loss at menopause.[37] However, as of 2006, no study has directly examined fracture risk in post-menopausal women who have used Depo-Provera; therefore, the risk is unknown. Pfizer and the FDA recommend that Depo-Provera not be used for longer than 2 years, unless there is no viable alternative method of contraception, due to concerns over bone loss.[30] Side effects In the largest clinical trial of Depo-Provera, the most frequently reported adverse reactions (which may or may not be related to the use of Depo-Provera) were: menstrual irregularities (bleeding or amenorrhea or both), abdominal pain or discomfort, weight changes, headache, asthenia (weakness or fatigue), and nervousness. Other, less frequently reported adverse reactions are listed in the patient and physician label information for Depo-Provera.[28][38]       Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Kim, Great explanation of how Onapristone, as antiprogestin works, using the 'parking lot' analogy. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Interesting, I take Progest cream since a hysterectomy last year and it is wonderful (natual progesterone cream) for joints, energy, etc. It seems I have CMT 1A according to the EMG and neurologist, although not confirmed yet by blood tests. According to the article that Gretchen posted a month or so ago on recent therapies in hereditary neuropathies, it's interesting... and it makes sense that progesterone should make CMT worse. But,actually this is a reason I have considered the blood test to check for sure if I have Type 1A, because HNPP, which looks very similar to CMT1A in some cases, is exactly the opposite in the gene and seems it would benefit from progesterone. So, it makes me wonder. Interesting how each person reacts differently, and perhaps one difference is the more natural cream formulation of Progest. All the best S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 and others, I got the depo twice after my daughter. It caused pain and weakness and I bled for 9 months straight like a regular period. I started progressing too. I've had bone pain and weakness since. Before that I went dirt biking with my friends. I was stable with the CMT for many years. Hopefully all you CMTers with no drug side effects,it won't play catch up later. 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.