WHERE TO AFTER ONWARD STUDY?

[Jules59]

Bonsoir everybody - I am a 53 yo 7 year RRMS patient who has been on this Cladribine/Betaseron study for 2 years - haven't done very well - and am trying to decide what direction to head in next when this trial is over in July. I don't know yet how long the "wash out" period is for the Cladribine, but my neuro has suggested Tysabri as my next DMT.

The things I read about Tysabri are a little scary but my biggest question is: if the risk of PML becomes a greater risk every year you are on it, how long can you expect to use Tysabri as a DMT? 3 years? 5 years? then what??

I am also considering another clinical trial, but I have usually set limits to experimental drugs vs. drugs that are being tested for different applications but have been in use by the population. I have a 13yo daughter and I feel responsible to not jeopardize my health any more than I have to.

I would appreciate any information you may have. Any advice? Suggestions? Many thanks!

[0485c10]

Here is a blog to a woman who was in tysabri before it got pulled from market then resumed after it was returned.

she is up to 58 infusions as of 3/15 and has no plans of stopping.

58 is about 4.5 years. who know how long people will be able to use tysabri? its tough to remember it still a relatively new drug.

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[lindaincolorado]

I will get my 54th infusion Friday Tysabri has given me hope and QOL!!!
I read of someone on this site whose wife has had 70 infusions. She was in the trial, then stopped when it was pulled and started again.

I hope not to stop until something better has come along or I no longer need a DMD (an ms specialist has said that ms halts on it's own at around 65). I pay attention to my health knowing signs of pml and praying I never have them.

Good luck

[Redwings]

Hi Jules59:
There are actually two major considerations with the PML risk with Tysabri. One of them is the length of exposure (duration of therapy). The other is that a significant number of people who developed PML had a history of having been on immunosuppressant medications before being on Tysabri, with some of them having been off of that med for months to years before beginning Tysabri and developing PML. In addition to that, the alarm bells went off in the Tysabri study group when PML developed in subjects who were on Avonex (an immunomodulator) concomitantly.

Your use of Cladribine theoretically puts you at even higher risk of PML with Tysabri. In a way, it's a little surprising that your doctor would recommend Tysabri for you, knowing about the increased risk. So far, the PML risk with Gilenya is unknown. But that also means that, unlike with Tysabri, there isn't a known reason for you not to try it next. Gilenya isn't quite as effective as Tysabri, but the lower risk of PML with Gilenya might make it the better choice.

There are also Novantrone and Cytoxan, which have been used to treat advancing MS for years. There has also been some success with Rituxan and Cellcept for MS. There is some risk of PML with these drugs also.

There is good reason for your neuro to explain in detail why s/he recommends Tysabri over other choices, knowing that you have an increased risk of PML based on your history of using Cladribine. If Tysabri still turns out to be the best choice, then so be it. But that choice can't be made without a deep discussion of the pros and cons.