Anyone on Tysabri and diagnosed with a progressive MS?

[GinR]

Anyone on Tysabri and diagnosed with Secondary Progressive? My best friend was prescribed Tysabri yesterday but the information that came with the drug said relapsing forms of MS.. He is completely progressive at this point.

Help or advice?

[HarryZ]

Anyone on Tysabri and diagnosed with Secondary Progressive? My best friend was prescribed Tysabri yesterday but the information that came with the drug said relapsing forms of MS.. He is completely progressive at this point.

Help or advice?

Tysabri was not trialled on SPMS so there really isn't any data on it in this area.

There was one small study done on patients who were experiencing an exacerbation but there was no difference between placebo and Tysabri in this area.

I think I read just last week that Biogen was looking at getting the label expanded to prescribe Tysabri for SPMS patients but I'm not 100% certain on this.

At this point, I'm afraid it will be a trial and error situation to see if one sees any improvement...or perhaps worsening scenario.

Harry

[Chilcotin]

I have SPMS and just had my 19th infusion of Tysabri on Monday (started December 2008).

I haven't had any relapses since starting treatment.

I feel that Tysabri is holding my progression...my husband says I have "tai-chi" MS going downhill very slowly :)

No real side effects except a very dry mouth and sometimes after an infusion I get a bad headache but not everytime. Ibouproferon settles the headache down. Worse thing for me is that I have bad veins so I have to be very well hydrated before my infusion so the nurse can get the IV started.

Hope this info helps with your decision.

[nancymno]

I have had 47 Tysabri infusions. After about 6 infusions I started to feel much better and it really took care of a lot of the fatigue issues I was having. At that time I was walking pretty good and could walk for about 1 - 1 1/2 miles. My walking never improved and I am now using a cane and can only manage a few hundred feet on good days. No relapses but have pretty much gone downhill the last 2 - 3 years. No longer working. Went on disability a year ago and approved for SS 6 months ago.

[HarryZ]

I have had 47 Tysabri infusions. After about 6 infusions I started to feel much better and it really took care of a lot of the fatigue issues I was having. At that time I was walking pretty good and could walk for about 1 - 1 1/2 miles. My walking never improved and I am now using a cane and can only manage a few hundred feet on good days. No relapses but have pretty much gone downhill the last 2 - 3 years. No longer working. Went on disability a year ago and approved for SS 6 months ago.

I sometimes start to think if Tysabri is going to follow the same path as the CRAB drugs. When they first came out, the CRABs were touted as a wonderful treatment that was going to really help MS patients. But after a few years, these results started to wain and combined with the side effects, MS patients started to go downhill. Now, the results from the CRAB drugs are considered disappointing in MS circles.

Harry