This Is MS Multiple Sclerosis Knowledge & Support Community

"Bernstein's Porges estimates the risk (of PML) jumps to 1-in-400 patients after three years of use."



http://www.nasdaq.com/aspx/company-news ... line000329

Please note: I do not judge you if you are on tysabri. It works for many; it just is not for me. My posts are for information. We should all try and stay informed.

This is a copy of a post from a friend---

"From the figures released by Biogen, the ever increasing risk of developing PML from Tysabri seems to slowing down:

Oct 2010: 1 in 535
Sep 2010: 1 in 538
Aug: 2010: 1 in 568
...
A bit different from the original 1 in 10,000 risk they estimated when they released the drug on the MS population. Wonder if we can trust their figures? I expect they're understating the number of currently diagnosed cases. PML has been a PR nightmare for Biogen."

Did you stop Ty again? I see you never updated

Pink2010 wrote:"Bernstein's Porges estimates the risk (of PML) jumps to 1-in-400 patients after three years of use."



http://www.nasdaq.com/aspx/company-news ... line000329

Please note: I do not judge you if you are on tysabri. It works for many; it just is not for me. My posts are for information. We should all try and stay informed.

Is this the correct link since it can't find the page?

Harry

What is your opinion of CCSVI? Harry

stillfighting wrote:What is your opinion of CCSVI? Harry

I find the theory behind it quite interesting, to say the least!

Back in the early 50's, Dr. Hinton Jonez (spelling may be incorrect) treated thousands of MS patients with IV histamine, thinking that MS was a vascular disease. Approx 80% of the patients showed improvement in their symptoms. Histamine improved blood flow and neuro conductivity. Although his results were quite amazing, he died suddenly and all of his work and research came to a grinding halt. It wasn't until the late 90's that histamine was again used for MS treatment.

So along comes CCSVI and Zamboni's procedure has shown similar results with the patients that he has operated on. There has to be something going on in this area. It will take a lot more research to prove one way or the other how CCSVI is going to pan out.

I've had one big concern so far and that is the reaction by some MS docs towards Zamboni's work. Guys like Dr. Freedman in Ottawa supposedly came out and called Zamboni a "quack" and that to me is totally unacceptable in this profession, especially when the opponents to CCSVI have little or no knowledge of what was initially done. But as I have said before, after following the world of MS medicine for some 45 years now, it is a "society" fraught with egos, deception and manipulation. I had the first hand experience of seeing this from the inside when the alternative drug Prokarin made its appearance in early 2000.

If this attitude didn't exist within the MS community, I feel that we could get more answers to CCSVI much sooner but that won't happen.

Harry

Yes, Elaine Delack whom had Mr. Hinton's studies.. She said she had been able to render herself symptom free.
Herself a nurse and had been given some freedom to medical labs and such.
Most neuros were prescribing the patch and the compounding was done.. I tried it and several other's I knew.. it seemed to be the miracle to end all miracles "on the boards".. then went it way just like many other's ... I never could tell if it was working or not. I had talked with Elaine on the phone and the only reason she could give me was I was too active and needed more histamine.. I guess I did not have enough MS.

stillfighting wrote:Yes, Elaine Delack whom had Mr. Hinton's studies.. She said she had been able to render herself symptom free.
Herself a nurse and had been given some freedom to medical labs and such.
Most neuros were prescribing the patch and the compounding was done.. I tried it and several other's I knew.. it seemed to be the miracle to end all miracles "on the boards".. then went it way just like many other's ... I never could tell if it was working or not. I had talked with Elaine on the phone and the only reason she could give me was I was too active and needed more histamine.. I guess I did not have enough MS.

Elaine didn't know Dr. Jonez existed until such time when she went to get a utility patent for Prokarin. The whole idea of histamine evolved from information given to her from another doctor back in the late 90's.

Although she was a nurse, Elaine had no special access to medical labs where she worked. And she had to separate her work on Prokarin at the time from her nursing position. Believe me, the two did not mix!

Most neuros were not prescribing Prokarin...most trashed it and some went out of their way to bad mouth it. The "miracle" stories came from a tv station in Seattle who went national with the story they did on Elaine on Prokarin before the alternative medication got close for public use. Elaine has been symptom free on the drug for years. About 1/3 of the patients that used it got multiple symptom relief as did my wife who used it for 7 years. About 1/3 of the users get 1 or 2 symptoms relieved and the last 1/3 get no benefit of it at all. Pretty much sounds like most MS meds, doesn't it?

Prokarin has recently been improved and has had some promising results with SPMS and PPMS patients because of the improvement. But I doubt the drug will ever get close to large use because it doesn't have big pharma's money behind it. There was only one double blind, placebo controlled clinical trial done. The results were decent but the NMSS ensured it got no further at the time back in 2002.

Harry

No people are looking to find something beyond fatigue management..
Histamine is well known to be based on bee stings.. and does seem to loose effect.
One is left not knowing if it ever worked. These are the things that leave both sides at odds kicking each other.
I have a neuro and he always was willing to prescribe it has were all neuro's of other ms patients I knew... no one continued to take prokarin.
It's still there for any one to take. If they wish

stillfighting wrote:No people are looking to find something beyond fatigue management..

Prokarin has the ability for some patients to go way beyond fatigue relief as it did for my wife.

Histamine is well known to be based on bee stings.. and does seem to loose effect.

Sorry, Prokarin's mechanism has little to do with bee stings.

One is left not knowing if it ever worked. These are the things that leave both sides at odds kicking each other.

I'm not sure where you came to that conclusion because if Prokarin works for you, you would definitely feel the changes. Again, I saw first hand what it could do for my wife.

I have a neuro and he always was willing to prescribe it has were all neuro's of other ms patients I knew... no one continued to take prokarin.
It's still there for any one to take. If they wish

Then those neuros represent quite a change for what the attitude was for a number of years. Reaading comments over the years on this forum and others where MS patients tried to get a rx for Prokarin shows a very different picuture. But taking just Prokarin or any other MS medication and doing nothing else won't get you too far with the disease. There has to be an entire plan of nutrition, eating habits and controlled exercise to go along with taking any medication for a disease like this.

Harry

I will not become argumentative with you.. the thought process on bee stings is that they release histamine into the body..
I knew of many ms patients on the prokarin patch... none stayed on it.
My neuro was open minded and did a very large and positive newspaper article on it.
I have always been very proactive in my disease. Do not question me on this...
I am very well aware of Elaine's diet and the patch. She failed to tell this until the patch was failing on so many people ...........they all then had the same chance to.........follow her diet advice and continue the patch.
I do not know of anyone that did.
This is MY experience and your not any one to question it,as you don't know me.

stillfighting wrote:I will not become argumentative with you.. the thought process on bee stings is that they release histamine into the body..

I'm sorry if you feel that I'm "arguing" with you. That's not my intent at all. I will, however, correct info about Prokarin that is posted since I am fairly familiar with it.

Bee stings cause the body to release the H1 receptor. Prokarin releases, in a slowly controlled manner, the H2 receptor. These receptors have different effects on the body.

I knew of many ms patients on the prokarin patch... none stayed on it.
My neuro was open minded and did a very large and positive newspaper article on it.

Many MS patients have tried Prokarin and many have come off it for various reasons. While it does help some patients a lot, it does nothing for others. It is nice to hear that your neuro is opened minded because many are not. I've run into my share of neuros who are not.

I have always been very proactive in my disease. Do not question me on this...

Please point out to me where I have questioned your proactivity intentions. I have commented on some of your Prokarin statements...nothing more and nothing less. If you do not want to be questioned on what you may post, then perhaps ThisIsMS is not the venue for you. Everyone here gets questioned on what they may say and that is one of the reasons that it is one of the best MS forums out there. Over the years that I have participated here, there have been many situations where various posters have had disagreements over their opinions. But in the vast majority of cases, the disagreements have been cordial and a lot of info has been shared because of them.

I am very well aware of Elaine's diet and the patch. She failed to tell this until the patch was failing on so many people ...........they all then had the same chance to.........follow her diet advice and continue the patch.

I certainly can't comment on what your experience was with Elaine and at what point in the development of Prokarin you tried the patch. I do know that my wife's experience with her was very positive in the 7 years that she used the patch before she passed away from other complications. I do know as well that the quality of the histamine phosphate from the supplier at one point had a lot of problems and caused a number of issues.

This is MY experience and your not any one to question it,as you don't know me.

Hey, ease up a bit! I, nor do I think anybody else here, is questioning your experience. But like I said earlier in this post, you have to be prepared to have others comment on what you may say about the various treatments on MS or anything else for that manner. This is a sharing site and very few people ever feel threatened. Take care.

Harry

HarryZ, I find you and many like you spread "your knowledge" and cheer every where you go.
I love those types of treatments that come and go and are not anything like the evil meds our neuro's are pushing.
One problem is most of them don't work.

Well I take that back, they might have worked if a person had been on a different diet, or taken more vitamins. Oh taken better vitamins.
Changed their attitude or changed their minds...
I see it all the time, it's called quackary and that's my opinion and sick people are targets every where.. that's why you can't get in to all boards..
Now, your come back will be..
The reason I can't get in on all the boards is they are owned by the drug companies............
Next topic please!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

stillfighting wrote:HarryZ, I find you and many like you spread "your knowledge" and cheer every where you go.
I love those types of treatments that come and go and are not anything like the evil meds our neuro's are pushing.
One problem is most of them don't work.

It's too bad you feel that many "like to spread your knowledge and cheer" as opposed to us sharing our experiences in the hope of possibly helping other MS patients. Yes, some of these treatments come and go but if their success rates help an MS patient in some way, then something has been accomplished for that patient. If you look at the success rates of the approved MS medications to date, you won't see much beyond 30%. And of course, the chances of side effects can be very high for many. My wife was told by her neuro several years ago to not bother trying any of the CRABs available since in his words, " they won't don't much if anything for you and we are generally very disappointed with their results compared to what the drug companies have been telling us". So much for believing in very expensive MS medications that don't work either!!

Well I take that back, they might have worked if a person had been on a different diet, or taken more vitamins. Oh taken better vitamins.
Changed their attitude or changed their minds...
I see it all the time, it's called quackary and that's my opinion and sick people are targets every where.. that's why you can't get in to all boards.

Of course there are quacks out there. There always will be when it comes to health care. But please don't paint everyone with the same brush. There are people out there, Elaine Delack being one of them, who genuinely try and help alleviate the suffering of MS patients. Even docs within the World of MS medicine call each other quacks which is quite disturbing. But I guess when egos are involved, they might say anything to discredit the other person. How sad.

Now, your come back will be..
The reason I can't get in on all the boards is they are owned by the drug companies............
Next topic please!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Please don't try and put words into my mouth. Others have tried and I can guarantee you it won't work. I can say that some boards won't let you participate because they don't want people who are close minded, bitter and not willing to accept another person's opinion even when disagreeing with it.

I really don't think that ThisIsMs is the place for you. We share ideas, opinions and even disagreements here without making personal attacks on others. That is simply not allowed in the rules of this forum.

Harry

Well your first mistake was assuming that the prokarin had not worked because of MY mistake in diet and lifestyle changes.
Now goodbye Harry................. please goodbye. I may be too closed minded for you. I am open minded enough for myself and here too