This Is MS Multiple Sclerosis Community: Knowledge & Support

Not sure where to post this question, so I figure the general discussion might be best...

A bit of background info: I live in Canada, I have drug coverage through work and Tysabri is covered at the same level as the CRAB’s. Tysabri is available with a doctor’s prescription.

I’ve been diagnosed since 2005 and upon diagnosis, my neuro labeled me primary progressive. At a follow up visit in June 2006, he re-confirmed his PPMS diagnosis with much more certainty and told me there is no point in taking any disease modifying drugs. At that time, he told me that he would prescribe me one of the CRAB drugs if I really wanted one, but in his opinion, they would do nothing for me. I took his advice and remained CRAB free.

Now, at my most recent visit this January, after describing my new symptoms (and the old ones which have not gone away) he told me that he thinks I could be having an attack so he put me on a round of IV steroids (which did nothing) and is now recommending Betaseron as a try. He did say that I have very a-typical MS and that the Betaseron would be a bit of a shot in the dark.

So I did my research on the available drugs and decided that I would like to try Tysabri if I were to go on one of disease modifying drugs.

In a follow-up discussion with the neurologist, insisted that he would not prescribe Tysabri because “I don’t have the kind of MS” that Tysabri works on. I’m confused at this statement since I thought that if I had MS where Betaseron could possibly benefit me, then Tysabri could also be potentially beneficial since my understanding is that the 4 injectible drugs and Tysabri are all used in the same MS scenarios (i.e. more of a relapsing remitting pattern).

I’m just hoping that some others out there may have some opinion on why my neuro is so against the Tysabri.

Any thoughts/opinions are appreciated.

Tysarbi is used for RRMS patients. Since you are PPMS, there is no reason to put you on it.

I really don't understand why he would put you on Betaseron because as far as I know it is not used for your type of MS either.

gwa

Ocoee,

Tysabri has not been tested on PPMS so there is no evidence that it would work on your kind of MS. There was one trial done with it at the St. Mike's MS Clinic in Toronto when they tried Tysabri on patients experiencing an attack. The results showed no difference than those on placebo so they came to the conclusion that Tysabri did nothing for those currently suffering exacerbations.

Betaseron, although not originally approved for SPMS or PPMS, now is approved for SPMS patients. Not sure exactly how that approval was obtained but they took the original trial data, massaged it around a bit and all of a sudden, bingo...it's approved for SPMS. I suppose because PPMS is closer to SPMS than RRMS, that is why your neuro may be suggesting it.

If the Betaseron doesn't do anything for you, then I suppose you can pressure your neuro to try the Tysabri. Of course there are risks involved and if these risks are totally explained, you can decide to use Tysabri. Whatever your choice, I wish you the best of luck.

Harry

PPMS has a whole different mechanism to it than RRMS or SPMS, so it is really not close to SPMS either.

There are a couple of trials for PPMS drugs going on now and hopefully something will be on the market soon to help those of you with this type.

Go to the drug pipeline forum to read about which drugs these are. I have holes in my head and don't remember all the trials. I just know that at least two are for PPMS.

Dignan does a remarkable job of keeping the drug pipelines up to date and his list is the most comprehensive one I have seen.

gwa

From my understanding thaY are all most effective with RRMS, but they do not work via the same physilogical mechanism. I think most dull down the immune response, another acts as bait for MRTC's and Tysabri works via attaching to immune cells so they dont make it into the CNS.

I dont know the full details (in case u didnt pick up on that yet...), but I could possibly understand an argument if he "feels" that youR MS is NOT mediated by the process Tysabri acts against, while he obviously "felt" Betaseron would reverse YOUR disease process. I would point out to him he got it wrong once, what makes him so sure he hasnt got it wrong twice? All you want is a single infusion to see if it works for you, you have no other option. Would it be an option to pay for it out of your own pocket this once to see if it would help?