Question:
Hi people, my sister called me and told me there is a new drug that was just ok’d by the FDA for treatment of lupus. ANYONE KNOW WHICH ONE IT IS…sis said all initials but they don’t make sense to me…She was not sure only that it was on the new last evening on NBC and that it is used in place of having to use so much cortisone….ok guys check on it for me…..this may be something we need to discuss here…. I can not find out about it any where and I am taping all news channels to see if it is out there…I know sis would not kid about something like this..she is the only one in my family that cares enough to understand this…Well my brothers and sisters any way. Janers
Response:
Hi Janers: I think I e-mail you information on this from my chronic illness house support group? If not I will find it again and post it! It’s LPGsomething something… Bahbahbah… I need a nap, sorry!!! Mary/az
Response:
The only one I’ve heard coming close right now is the DHEA. Can’t remember the initials and number it used, I’ve been taking it from a compounding pharmacy for 2 years now and it has helped some-no cure here-just a few more easier days and I’ll take that any day. Cindy
Response:
There is a new drug that is supposed to be for helping control the kidney damage of lupus but it is not for lupus in general. And no, I can’t recall what it is either and I think it’s still in clinical trials anyway. As far as others… I didn’t see anything in the newsletter from the LFA but that doesn’t mean it’s not out there. DHEA is still in work in clinical trials. On Mon, 25 Sep 2000 17:03:26 -0400, you wrote: >Hi people, my sister called me and told me there is a new drug that was >just ok’d by the FDA for treatment of lupus. ANYONE KNOW WHICH ONE IT >IS…sis said all initials but they don’t make sense to me…She was not >sure only that it was on the new last evening on NBC and that it is used in >place of having to use so much cortisone….ok guys check on it for >me…..this may be something we need to discuss here…. >I can not find out about it any where and I am taping all news channels to >see if it is out there…I know sis would not kid about something like >this..she is the only one in my family that cares enough to understand >this…Well my brothers and sisters any way. >Janers
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Response:
It’s currently still referred to as GL701. It’s a DHEA derivative. DHEA for Lupus http://www.medformation.com/mf/news.nsf/MedicalBreakthroughs/DHEA_for… Sandra
Response:
Thank you Sandra,, you are a doll. I have some info on this but nothing like this site….. — Janers "Somedays are diamonds, Somedays are stones" Somedays this pain won’t leave me the hell alone"
Response:
Yes, the new drug is DHEA which also called prasterone. A company called Genelabs and Stanford University have been running a three phase study on it a few years ago, that lasted for over three years. The results came out very positive. You can check on it by looking at the news releases on the Genelabs website at http://www.genelabs.com/pr/news.htm. The particular form of DHEA, they were giving the patients was very pure and had been patented by them under the name GL701. When finally approved by the FDA, it will be marketed under the name Aslera. When I first heard about the results of that study in early 1998, my wife had been diagnosed with Lupus about a year before. I drove to a the Health Food Store in USA from Canada, and bought a few bottles of DHEA and I started to give her two 25 mg tablets a day. Of course she was already taken another medication Plaquenil but she had been weaned completely off from Prednisone about 3 months before she started taking the DHEA, and a lot of her symptoms had already came back After a few days on the DHEA, she definitely was feeling better. At the next visit to her doctor, a rhumatologist, I told him about that. He said that he too had heard about the same study, and said that for the study, they were giving a dose of 200 mg a day which was much more than the 50 mg a day that I was fiving my wife. He did not discourage us in any way to try the DHEA. After the visit, we increased the dose to 4 tablets (100 mg/day) and then my wife really started to feel much better. Eventually, about six months later she was takind 150 mg a day and ever since she has been feeling great. The doctor has been monitoring her condition very closely by having tests done first every three months. After about a year, her conditions had improved so much that he decided that tests were needed only every six months. That was a year ago. Now she feels even better and the results of her last blood tests showed that her white cell count has doubled from what it was two years ago from 1.5 to 3.0 (4.0 is the lower limit for normal). Her blood platelets have also increased from 75 to 125. Almost all of her symptoms have gone and she now leads an almost normal life. At the last visit this month, her doctor was really pleased with the results and he is very anxious for the new medication to be approved in Canada as well. Unfortunately, that will not occur before it is approved in the United States. In the meantime, I will have to continue to cross the border to get DHEA from the United States in hoping that I don’t get caught by the customs people who would confiscate it. DHEA is available almost everywhere in the US. It is hard to understand why so few people so far have tried it to treat Lupus. Of course, your doctor cannot prescribe it because it is not approved yet for Lupus. But I am sure that he won’t be mad at you if you decide to try it. Of course, it is very important that you continue to take the medication that he has prescribed and you must tell him if you take DHEA. He will closely monitor you by having blood tests done periodically, and then he and yourself will be able to judge if it is helping you or not. There are very few side effects to DHEA, one of them is some hair growth in the face. In the case of my wife, this has not been a problem at all. Don’t forget that it is the hormone testosterone that promotes the facial hair problem. In the case of a person suffering from Lupus, testorone level is way down low and even if DHEA raises it, it will only go up to about the level found in a completely healthy person. On the bottle containing the DHEA, it says that a man should take no more than 25 mg a day, and a woman no more than 15 mg a day but this is for healthy people. If you have Lupus and you take such a low dose, you will notice probably no improvement at all. A problem that you may encounter with DHEA from the Health Food Store is the dose that you are getting may not be what is written on the bottle. About two years ago, a magazine in the US, had tests made on about six different makes of DHEA available in Health Food Store. In one make, the actual DHEA content was only one-third of what was written on the bottle. So try to buy only the best known makes. In our case, we found that it is best to order it from the Life Extension Foundation and have it delivered to an address close to the Canadian border. They sell pharmacieutical grade DHEA, and they monitor closely the quality of what they sell in their own test laboratory. You can find their Web Site at www.lef.org I hope that this will be useful to somebody. Good luck to you all, Georges "Janers" <rojak…@bright.net> wrote in message
news:D2Pz5.66$m37.1217@cletus.bright.net… – Hide quoted text — Show quoted text -> Hi people, my sister called me and told me there is a new drug that was > just ok’d by the FDA for treatment of lupus. ANYONE KNOW WHICH ONE IT > IS…sis said all initials but they don’t make sense to me…She was not > sure only that it was on the new last evening on NBC and that it is used in > place of having to use so much cortisone….ok guys check on it for > me…..this may be something we need to discuss here…. > I can not find out about it any where and I am taping all news channels to > see if it is out there…I know sis would not kid about something like > this..she is the only one in my family that cares enough to understand > this…Well my brothers and sisters any way. > Janers
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