Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I'M SO TRIED OF MG GET STEALING MY LIFE FROM ME . MORNING WEAKNESS , LEGS TRIED , CANT DO THE THING I WANT TO, OUT OF WORK , DONT LIKE TAKING THE MED BUT I DONT I WILL BE N ICU .WHAT IS THERE FOR A MAN TO DO . SOMEBODY HELP ME
I believe you're talking about the Curavac "vaccine" (that really isn't a vaccine). Do you have a source for your statement that the vaccine "has been fast tracked by the FDA"? 'Cause last I checked, the FDA is no where near approving this thing. There hasn't been a phase 1 trial completed with it (and I'm pretty sure they haven't even started a phase 1 trial). Without proper trials, it ain't getting approved.
(sorry if that's a bit blunt / harsh / rude. It's been a rough few months, and I'm apparently in a REALLY bad mood today.)
"last year, the drug was ready for clinical testing. But it would take another 5 million and a couple of years before this could begin. Despite contacting major biopharmaceutical companies, he couldn't find the money. Pharma companies say there are simply too many start-ups out there to take risks. "We invest only when the science is proven," says Roch Doliveux, chief executive of UCB SA, a Belgian biopharma company.
Dr. Huberty decided he couldn't wait. Last summer, between June and August, he injected himself three times. He felt cured. He was able to swim, go for long walks and even ski. His nanomole-per-liter antibody count, a traditional measure of myasthenia gravis, fell to near normal levels, according to independent hospital records reviewed by The Wall Street Journal.
In late April, he had a relapse. In May, he re-injected himself with a dose six times as strong as before. He now feels better again. "I swam 60 laps yesterday," he said in a recent interview at his home, as he watched his wife Leonie play with their eight-month old daughter Isalyne.
Still, Curavac needs investors. Dr. Huberty says it will take 20 million and up to 10 years of clinical trials before he can sell the drug on the market.
The market is there, Dr. Huberty says. There are 200,000 myasthenia sufferers and 15,000 diagnosed each year in Europe, the U.S. and Japan. He plans to sell the curemost likely three to five injections, possibly with a booster injection a few years later, he saysfor $30,000 apiece, the same as the cost of one year of conventional treatment. Other drug companies, he says, aren't interested "because they want a pill they can sell every day. They're not interested in curing the disease."
Most of the medical community is less convinced.They say a cure will emerge through more-traditional research projects. Self-injection "is a totally insane idea," says James Howard, an expert on myasthenia who works at the universities of North Carolina and North Carolina State.
"I'm not saying the vaccine doesn't work, but testing like that, well, that's not proper science." The lower nanomole/liter measure could be due to other factors, or the placebo effect, Dr. Howard says.
Dr. Huberty says he is prepared to inject himself with more of the vaccine. "It took five injections for some dogs [to be cured]," he says. "I am ready to do whatever it takes to help sufferers of myasthenia gravis."
Link may only work once, because it is WSJ and a subscription is wanted, but I have viewed it a couple times through google.
http://online.wsj.com/article/SB10001424052748703882304575465313342139200.html
If anyone knows more about this vaccine Please let me know.
Q: Saw ortho with leg pain and found to have a stress fracture despite good bone density. Is this common, from muscle weakness, I guess? Also, neuro showed me FDA warnings re Cipro and Avelox which were issued earlier this year. I can't find those Rx warnings in archives, maybe cause I'm not familiar enough with the site yet. If this is new to you all, perhaps you'll help me pass it along correctly? Thanks. Best wishes to all for an uplifting, healthy day!
This is not a vaccine in the usual sense we think of as prevention, but in a more unconventional sense of using the bodies reaction to a foreign substance to create internal change. I agree with stuartsmom that anything that shows promise in relieving suffering should be pursued and not dismissed because it is unconventional or doesnt mesh with your personal research. However, in defense of the doctor, I think most of us who have been represented in the media realize how what you say can be quoted or misquoted in such a way as to conform to the reporters preconceptions or to make a story more interesting.
Calling it Curavac and saying there is a conspiracy among pharmaceutical houses because they want a pill that you have to take every day, ring my warning bells. It doesnt help that the research subject has a financial interest in the product. But all that may just be a function of my cynical idealism :-)
Scientific evaluation/research is just that and personalities and preconceptions have no place there. . . but we are fortunately and unfortunately human, even neurologists, (sorry) b.