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Let's All Get The Ball Rolling
I need a new drug, sounds like most of you do too. Well, FDA has been taking it's sweet blanks time with BG-12 approval.
Biogen submitted EVERYTHING needed last year, FDA's just playing FDA. I need your help as others in here surely do. Please call & question what the hold up is with BG-12 just to wake them up. Maybe they forgot about it. 1-855-543-3784 & 1-888-INFO-FDA btw- as i've said, bg-12's MS effectiveness was discovered by a derm scribing it (Fumaderm actually) for PSORIASIS. Not only did patient's psoriasis improve (what Fumaderm was made for), so did the MS. bg-12 is a modified version of what's been on the market overseas for 10+yrs. Will love to hear if any of you have psoriasis that improves with bg-12 and/or if your MS improves on a psoriasis med. Call please |
I have both MS & P and take LDN, which is used for
both. It's done wonders for my MS progression, but notta for P. Or maybe my P would be worse without LDN? B12 just sounds like another poison to me. Be careful for what you wish, Eddie.:eek: |
There ya go. You have both!
Guy at MS meeting's father had it bad, he gets it! My aunt has it bad. You have it. Starting to see a connection? Who else has Psoriasis & MS here? |
Looks like March 27th is the pending date:
http://www.mslivingwell.org/2013/01/...-fda-decision/ http://bostonglobe.com/business/2013...EgK/story.html |
I often wonder how may immunosuppressents/immunomodulators actually cross over and help other autoimmune diseases. Bg-12 is a perfect example of this; although they have changed the formula a bit. I hope this gets passed as it seems to be helpful to many.
BTW - I don't have psoriasis. |
Does anyone know what, if any, side effects BG-12 carries?
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I found this......
In Europe, BG12 is the same drug compound as "Fumaderm" which is sold to people with bad cases of Psoriasis. Fumaderm is made by a Swiss company named Fumapharma AG. Biogen bought the rights to sell Fumaderm as an MS drug. Fumaderm is Dimethyl Fumarate, or Fumaric Acid Esters, which are derived from Fumaric Acid, which is made by the cells in our bodies when exposed to sunlight. It is believed there is some type of defect in Psoriasis sufferers in that they don't produce Fumaric Acid easily. Fumaric Acid has long been used as a Psoriasis treatment by dermatologists and the side-effects are pretty much the same as BG12. Dimethyl Fumarate is also being explored as a treatment for other autoimmune diseases besides MS and Psoriasis, like Lupus. Malic Acid is a pre-cursor to Fumaric Acid in the Citric Acid Cycle. If you take too much Malic Acid you get similiar side effects to Fumaric Acid and BG12 (flushing, gastro pain, etc.) Malic Acid has been shown to reduce fatigue and pain in Fibromyalgia and Chronic Fatigue Syndrome patients. Malic Acid is found in fruits, especially apples. Apples have long been known as good for your skin and oral health. Toothpaste and cosmetics often contain Malic Acid. Apple Cider Vinegar is a home remedy for Psoriasis, as well as other autoimmune diseases, including MS. So, while you wait for BG12, you may want to consider taking Malic Acid a couple times a day as it looks like it will help with MS symptoms and progression like BG12 without the potentially harsher side effects. The other question is why does BG12, Fumaric Acid, Dimethyl Fumarate, Malic Acid, work the way it does for autoimmune diseases? It seems that they are critical to producing energy in the form of Endorphins. Endorphins are hormones that besides reducing pain and increasing pleasure, are known to regulate T-cell activity in the immune system. In MS there seems to be a T-cell imbalance where our myelin is getting attacked. Two ways to get Endorphins are from direct sunlight and exercise - both usually recommended by neurologists for MSers. MS, Psoriasis, other autoimmune diseases, are most often found in regions of the world where people either don't get much direct sunshine on their skin or have a diet lacking in vitamin D. Spices also seem to exert a protective effect on MS as demonstrated by the current research being done on Curcumin, Cinnamon and Saffron. People who live in parts of the world where they eat a lot of spices have very low rates of autoimmune disease. They also typically eat lower fat diets and get more direct sunlight on their skin. I wouldn't be surprised if they ate more fruits which contain Malic Acid. Endorphins also explain why Low Dose Naltrexone (LDN) works well for MS as well as other autoimmune diseases, like Psoriasis. LDN causes over-production of endorphins by the pituitary gland by 2-300% the day after you take it and most people with MS who take LDN experience reduced fatigue and pain. It all seems to come down to that endorphins play an essential role in protecting the human body from disease and aging. |
I wish the new formulation for three times a week Copaxone would come out. All of these years of daily shots are getting really old. :rolleyes: But I'm very fortunate that it's helping me.
At least my 20 pounds I put on over the past few years makes it easier to find fat to shoot into. :wink: |
I'll call tomorrow. Shame I have to speak up for every person that's dying in here. Pick up the phone, tell FDA how bad you need this drug.
Worked (still is) excellent on a local group member in trial with progressive. I'm sold. edit- it's possible some of the nasty effects from the original psoriasis (Fumaderm) med has been removed. Slightly. |
I think I'll stick with my LDN. It raises my endorphins,
it's cheaper and doesn't make me sick tp my tummy.;) |
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I'm totally on board for new medications although I am also respectful of the approval process.
Have you seen the outrage and hysteria when a medication might have caused a serious adverse reaction in one person out of 10,000? :eek: Its like a witch hunt. If we are going to push for new advances and quick approval we need to recognize and be willing to accept the possible down side also. We can't have it both ways. |
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