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Did anyone take Tysabri that was SP? And did it improve you any? I thought I had read about some that did.

Amelia,

amelia wrote:Did anyone take Tysabri that was SP? And did it improve you any? I thought I had read about some that did.

I do not believe that anyone in the Tysabri trials was SPMS. That would not have fit the profile of the patient they were looking for.

I don't have any numbers but reading other MS forums I learned that there were some SPMS patients who had either one or two Tysabri infusions in the first two months of last year when the drug was available to the general public. A few people said they felt so much better but were unable to continue when Biogen pulled it off the market. So in such a short time, there was no ability to determine any meaningful data from these patients.

Harry

thanks Harry
I feel, my opinion only, that SP is more of an exceleration of the RR part of MS. Explains why most people don't go into it until many years of RR. If Tysabri works on immflamation, then should it not work for SP?

Amelia,

amelia wrote:thanks Harry
I feel, my opinion only, that SP is more of an exceleration of the RR part of MS. Explains why most people don't go into it until many years of RR. If Tysabri works on immflamation, then should it not work for SP?

I've read that some docs feel that SPMS is a none inflammatory period of one's MS. That is, axonal damage is or has taken place and no longer does the patient go through the RR phases. That said, Tysabri would not have much if any effect since immune system irregularities are not really taking place.

Harry

That's correct, Harry. Only RRMS has an "inflammatory" process with it.

SPMS and PPMS do not include inflammation, so any drugs that work via mechanisms of decreasing or affecting inflammation will be, for the most part, useless for the progressive forms of MS. Hence why research with regard to those different forms of MS are separate from RRMS research.

But since RRMS (and the associated inflammation) tends to make up a larger number of the MS population, concentration in research is mainly with regard to RRMS.

I have learned something today! I know there is VERY little in meds for PP and SP. What is out there? I have a friend that DR says he feels he has gone this route.

The only thing that has actually been FDA approved for treatment of progressive types of MS is Novantrone (chemotherapy drug).

Neuros will try other things, but there isn't much of anything out there for actual therapy of the pure progressive types of MS (with no definable relapses or inflammation). Unfortunately. There is clinical evidence that Betaseron MAY be somewhat helpful sometimes for SPMS (without relapses), but other than that..........not much else. Notice the word "relapses" or "relapsing" in the following when they refer to some progressive MS. MOST progressive MS does not have relapses, hence why they specifically clarify which more infrequent types of progressive MS they are talking about treatment for.

From the NMSS website:

Disease management for progressive disease has recently become the focus of increased attention by MS researchers and clinicians:

The interferons—interferon beta 1a (Avonex® and Rebif®) and interferon beta 1b (Betaseron®)-are approved for people with relapsing forms of MS, which includes those with secondary-progressive disease who have clinical relapses, as well as those with relapsing-progressive disease.


In October of 2000, the FDA approved Novantrone® (mitoxantrone for injection concentrate) "for reducing neurologic disability and/or the frequency of clinical relapses in patients with secondary-progressive, progressive-relapsing, or worsening relapsing-remitting MS." This is the first therapy approved in the United States for secondary-progressive or progressive-relapsing disease. The FDA approval criteria indicate that Novantrone®, which is administered by intravenous infusion, should only be used by those with normal heart function, and for no more than 2-3 years because of possible cumulative cardiac toxicity.

The following chemotherapy agents (although not specifically approved for MS) are being used by physicians in an effort to slow disease progression:
Imuran® (azathioprine)
Cytoxan® (cyclophosphamide)
Methotrexate

I believe researchers are hoping that they can find something to keep RRMS from morphing into progressive MS, but for those who start out with non-relapsing progressive MS right from the get-go, or whose RRMS turns into non-relapsing SPMS or PPMS, ......well...........again........unfortunately........

Amelia,

There are a number of drugs in trial for SP MS - the front runner is MPB8298 (BioMS) - recent results claimed it stopped progression in some for five years. Might be worth seeing if your friend could get on the trial.

Rituximab (Biogen) is being trialled for SP and PP MS as some think that it is the B cells that are the cause of the progressive forms of the disease. Again, might be worth looking at getting on a trial.

And Dacluzimab in a small trail was reported to have halted the disease or provided improvements - the small trial consisted of RR and SP patients.

Dr Mark Freedman in Canada is trialling bone marrow transplantation on those with SP (and I think now with PP). Apparently, none of the patients treated have got worse following the procedure (which is very risky).

SP and PP are pretty much about neuro-degeneration - the slow death of axons and neurons (the researchers assume because of the loss of myelin). There are some neuro-protective drugs being trialled - a company called Neuren has a couple of drugs. Other researchers such as Dr Peter Calabresi are looking at neuro-protective agents such as EPO. Others are looking at nerve growth factors to repair damaged nerve fibres.

So as OddDuck says there's nothing really on the market for progressive MS (apart from Novantrone). But getting on a trial for the therapies in the pipeline might be an option for your friend. Protection and repair seem to be the current focus which should benefit all MS patients (some time in the future).

And of course some with progressive MS have reported good results on the abx regime.

Ian

PS Here is a link to an NMSS article on progressive MS

http://www.nationalmssociety.org/Highli ... ession.asp

amelia wrote:I have learned something today! I know there is VERY little in meds for PP and SP. What is out there? I have a friend that DR says he feels he has gone this route.

My wife, who has had MS for 35 years, started to become SPMS in 1996. Her health and symptoms were on a downward spiral until 2000 when she started on Prokarin, a transdermal patch which releases histamine diphosphate in your system in a slow and controllable manner. Marg was fortunate to be in the 1/3 group that experience multiple symptom relief with this medication. About 1/3 of the users get 1-2 symptoms relieved and the remaining 1/3 get no benefit at all.

There has only been one double blind, placebo controlled clinical trial with Prokarin, specifically for MS fatigue. The results were positive and the MS Journal, who published the trial results, suggested further trials were warranted. Unfortunately, the nurse who invented Prokarin and her company don't have anywhere near the amount of money to conduct further trials.

If you want further info on Prokarin, go to www.edmsllc.com and you can read up on it. There is virtually no side effects with this drug and since it is applied with a patch, it is painless. It doesn't work for everyone but has certainly given Marg some quality of life for the past 6 years. I hate to think what she would be like without it.

Harry

Thanks to all. I'll read up and check up on this info. Our friend is really doubtful on having SP, but could. I also want to know all since my husband has had MS about the same length of time and could go SP at any time. I guess that is my frustrations with Tysabri. And yeah, it may not work, but we will not know until he tries it. IF the FDA will get off the pot and do something soon.

Amelia,

IF the FDA will get off the pot and do something soon.

Not that I'm a big fan of the FDA, but they are not going rush Tysabri this time around. That's what they did in approving it in the fall of 2004 and along with the Vioxx problems that showed up as well, the FDA has some operational and public relations fences to mend.

At the moment, Tysabri is not recommended as a therapy for SPMS and the guidelines that are starting to appear suggest it may not be. From what we know about the inflammatory phase of MS (RRMS) and the situation of SPMS which supposedly does not have inflammation associated with it, Tysabri may not do anything for SPMS. It is certainly worth a lot of discussion with one's neuro before going this route.

Harry