BS: Procarin - MS treatment?

Subject: BS: Procurin - MS treatment?
From: SINSULL
Date: 28 Aug 03 - 10:15 PM

I caught the end of a news report tonight about a drug regimen invented by a woman who then tried to GIVE the idea to a variety of pharmaceutical companies who turned it down - not enough profit. She suffered from MS and found that this cream applied as a timed release under a bandage helped her.

It has not been approved by the FDA but several doctors stated that 2/3 of MS patients improved with it, some cures almost miraculous. Several pharmacies offer the preparation to their customers. And finally a blind test is underway with very promising preliminary results. One man was unable to speak, use his hands, or walk and was shown walking, speaking, and stacking items - all with difficulty but at least free of the wheel chair and able to communicate.

Anyone know any more about this? We have a number of Mudcatters suffering from MS. The inventor wants no profit from the medication. She believes her own improved health is payment enough and that she was put on this earth to invent a cure for others.
SINS

Subject: RE: BS: Procurin - MS treatment?
From: Mark Cohen
Date: 29 Aug 03 - 12:05 AM

2/3 of MS patients improved with it, some almost miraculous -- from that alone I'd be more than a little suspicious. The reason I say that is that those are exactly the kinds of statements that have been made about every new "miracle treatment" for every chronic debilitating disease that has resisted standard medical therapy, for centuries...none of which has withstood the test of time.

It is also HIGHLY unlikely that a drug company would turn down a treatment for MS because of "lack of profit." If any drug company comes up with a real cure, or even significantly improved treatment for MS, their officers and major shareholders will be retiring early and buying condos here in Hawaii.   

I'm not saying categorically it can't work, just not to get your hopes up too high at this point. This is a terrible disease, and if this treatment can help a few people feel better that would be wonderful. Unless it ended up costing a lot more people huge amounts of money and anguish and disappointment, and making a very few unethical people very rich...that wouldn't be wonderful.

Aloha,
Mark

Subject: RE: BS: Procurin - MS treatment?
From: Art Thieme
Date: 29 Aug 03 - 12:18 AM

I do hope this works better than bee venom therapy, having all your fillings removed and/or any of 30 or 40 other miracle treatments that well-meaning friends have insisted I try. If this has validity the National MS Society will check it out and YELL it's praises to the skies.

Sinsull, thanks for telling me/us about it.

Art

Subject: RE: BS: Procurin - MS treatment?
From: Dharmabum
Date: 29 Aug 03 - 07:47 AM

The trouble with this disease is that it attacks at so many different levels. Making it difficult to track ones progress with any real certainty.
I was diagnosed almost twenty years ago at the age of 30 with a relapsing/remitting form of MS.
In that time, the MS has gone from one extreme to the other,a number of times.
I've had relapses that left my legs feeling like rubber stilts,only to be walking without the aid of a cane 6 or 7 months later.Without taking any medication.
Since being on medication,(Avonex)I've had relapses that seem to have left permanent symptoms,yet, I'm having fewer relapses now.
So who can say what works & what doesn't.

Hell,I read about a woman that was cured after being struck by lightning!
If they could prove to me that was a surefire cure,I'd be the first one in a thunderstorm with a metal pole in my hand while sitting on a beehive!
I hear them mercury fillings make good conductors Art!

I would like nothing more than to have someone discover a cure for MS,& I'm certain that someday they will.
But in the meantime I think it's important to keep one's hopes at a realistic level.

DB.

Subject: RE: BS: Procurin - MS treatment?
From: Jeri
Date: 29 Aug 03 - 08:23 AM

From what I've been able to find on the net, Procurin seems to not be a drug but the product of a procedure. (Please correct me if I'm wrong.) They draw your blood and then concentrate certain elements in it. The procedure's probably patented, but you can't patent and sell people's own blood products. One web page said the price was $80 a dose.

The disease, as folks above have stated, has symptoms which can come on fast and be devastating, then just go away. If all that exists is anecdotal evidence, there's no way to tell if the Procurin had any effect or whether the symptoms just let up.

Subject: RE: BS: Procurin - MS treatment?
From: GUEST
Date: 29 Aug 03 - 02:28 PM

And Jeri....the web page is?????

Subject: RE: BS: Procurin - MS treatment?
From: Jeri
Date: 29 Aug 03 - 03:06 PM

There's this page: The Voice of the Diabetic. The pertinent stuff is a bit more than halfway down.

"It is manufactured by drawing blood and processing it in the lab to concentrate growth factors. The product is frozen single-application plastic tubes which are stored in a freezer. Thawing takes place on the day of usage. Once liquefied, it must be used within 24 hours. After exposure to room temperature, Procurin must be used within fifteen minutes and the remainder discarded."

Another link: Vim and Vigor Magazine.

"Some of the latest advances in dressing wounds work to keep them moist, including ointments, skin grafts and products that stimulate the patient's growth of cells and collagen. One example is Procurin. The patient's blood is taken and growth factors, such as white blood cells, are extracted and applied as a topical."

If you like multi-syllabic, medico-genic verbiage: Nonsurgical Modalities to Enhance Healing and Care of Soft Tissue Wounds

Application of autologous platelet derived growth factors (Procurin, Curative Health Services, Setauket, NY) have also been successful in healing pressure sores and chronic wounds.

Subject: RE: BS: Procurin - MS treatment?
From: Peg
Date: 29 Aug 03 - 04:46 PM

My mom   has MS (diagnosed   at age 27, remission for many years) and   Type 1 diabetes   (age   35). It would be great if there was anything that could help her. I don't think she does anything special right now. She is having problems with her right hand that are driving her mad and can hardly walk anymore. But her worst problem is that she seems to be without hope.

Subject: RE: BS: Procurin - MS treatment?
From: Mary in Kentucky
Date: 29 Aug 03 - 06:58 PM

As Art says, If this has validity the National MS Society will check it out and YELL it's praises to the skies. So far no mention of it at their site.

We MSers aren't trying to be negative, but we've been through this many, many times. Usually well-meaning friends and relatives call as soon as they hear about a new treatment. (Art and Dharmabum, have you been approached about horse-back riding, Tai Chi, and special vitamins? The bee venom and fillings are old news, but I personally know folks that have done it.) I welcome the news, but have learned over the years to check it out thoroughly first.

The problem with MS is that it's a cyclical disease.....it's hard to know if improvement is due to a treatment or was just going to happen anyway. Also, many "miraculous cures" occur after a physical or emotional shock.......often not lasting........but certainly something to ivestigate. We have some of the best researchers IN HISTORY working furiously to find a cure for this disease.

Amazing that this story surfaced on Mudcat today......I just got back from seeing my neurologist and for the first time EVER, she finally answered a few questions. She admitted that if it weren't for Betaseron I'd probably be in a wheel chair today.

Subject: RE: BS: Procurin - MS treatment?
From: Art Thieme
Date: 29 Aug 03 - 08:58 PM

Mary,

I have half-jokingly put forth my theory that: If someone had a spontaneous remission on the day they ate a turd pizza, they would scream to the world that TURD PIZZA CURES MS. They'd be asked to go in Oprah and say the same thing. Then PIZZA HUT would put it on their menu as healthfood. ect. ect. ect. I was told at Mayo Clinic that what I had for the last 25 years was progressive MS all along. Progressive MS won't be affcted by Beta Seron or Avonex or whatever. I was having multiple spinal surgeries for the SAME DAMN SYMPTOMS as MS and nobody thought of looking for MS. Now I can walk about half a block or a block on a good day. But I can't get home again from there. So I use an electric scooter to get around town and to hell with anyone who laughs and yells----which the kids do from the safety of their cars. The back pains could be from all the surgery and fusions that were done in my neck. But who the hell knows. Not me and not the doctors who are all too ready to see folks' ptoblems through the tunnel vision of their own particular medical specialty so they can "practice" their pet schemes of the moment. Even if we had a neurologist around here, I'd not go to them !!! As I've said before in this forum...

Oh, to hell with it. Why bother. MS will do it's own thing whatever.

Art Thieme

Subject: RE: BS: Procurin - MS treatment?
From: Mark Cohen
Date: 30 Aug 03 - 12:02 AM

Well, as best I can tell, Procurin may be a trade name for a form of platelet-derived growth factor. That's a substance that is ubiquitous in the body, involved in the stimulation of growth of various connective tissue cells. There are some papers suggesting that it can be very helpful in healing pressure ulcers and other wounds that don't heal very well. There's also some in vitro (test tube) evidence that it stimulates growth of the supportive cells in the nervous system, which may be why somebody thought it might help in MS.

However. (1) It is a locally-active substance, meaning that if you rubbed it on your skin, it would not magically find its way to your brain. (2) Not surprisingly, PDGF has also been associated with tissue growth that is not so helpful, including fibrosis of the retina, arteriosclerosis, and some cancers. The specific PDGF receptors in a particular tissue determines how the tissue will respond to the substance. You can't pick and choose what you want it to do. (3) While you can extract PDGF from a sample of blood by allowing it to clot, it is generally made using recombinant DNA technology, inducing E. coli bacteria to make the stuff in large amounts. (4) It's not a "new drug" -- PDGF has been available commercially for years, used in laboratories that grow cells in tissue culture, mostly for research. And it's not even a drug at all.

Most likely, the MS patients who got better by rubbing Procurin on their skin would also have gotten better by rubbing plumeria massage oil on their skin...and they would have had lots more fun, and probably smelled nicer, too. And, as the folks above have pointed out, these "miracle" testimonials don't mention the follow-up reports, how many of the people who were "cured" went on to have yet another recurrence of their illness.

Obviously, I'm not telling people like Art and Mary anything they don't already know. And I'm not faulting Sinsull at all for posting--you never know which one of these things will wind up being the one that has some benefit. But I don't think it's this one.

(This will tell you more than you would ever want to know about PDGF.)

Aloha,
Mark

Subject: RE: BS: Procurin - MS treatment?
From: SINSULL
Date: 30 Aug 03 - 10:18 AM

I did the net search and found nothing but the blood drawn Procurin. If I can figure out which station aired this, I will get back to you. They did have a website for information but i didn't write it down - sorry.

Subject: RE: BS: Procurin - MS treatment?
From: SINSULL
Date: 30 Aug 03 - 10:38 AM

I have to get more sleep! The name of the drug is Procarin or Prokarin. Sorry. Here are the links (some of them). There is quite a bit of controversy about it and (SURPRISE!) some doubts about its effectiveness.
http://www.albany.net/~tjc/histamine99.html
http://www.msonly.org/library/files/procarin.html
http://thecompoundingrx.com/procarin.htm
http://www.msfacts.org/procarin.htm
http://disc.server.com/Indices/148446.html

Subject: RE: BS: Procurin - MS treatment?
From: Mary in Kentucky
Date: 30 Aug 03 - 02:15 PM

Here's what the MS Society has to say: Procarin Update.

A Google Search using the words, "Elaine DeLack" MS, will tell you more than you want to know.

I welcome all the new info. I just wish the news media wouldn't spread misinformation and misleading ideas. So much of the new research has to do with the immune system and the buzzwords therein, that many lay people start making connections that just aren't valid. (There are, however, good research clues which suggest directions to follow.) Procarin is histamine and caffeine. Bee venom contains histamine. Mercury vapors in amalgam fillings somehow mess with the immune system. MS is an autoimmune disease. Betaseron somehow messes with the immune system. People like me have several autoimmune diseases....

For some reason the name Elaine DeLack is very familiar. I suspect I read about her in some MS newsletters or magazines. I'll look around.