Husband starting Tysabri next month!

Hi there,

I am only on my 2nd Tysabri infusion, but so far so good!  I was also taking Betaseron before I started, and I must say just stopping that made me feel WAY better!  It was very draining to me.  I wish your husband great success with Tysabri, I've heard nothing but good things from the nurses and other patients I've met at the clinic.  

If you have any questions I'll do my best to answer...

Take care,

Shar 

Hey guys, thank you for responding. So far, we've not been given any protocol info. about pre-treating with benadryl and Tylenol, though I have read on the board how you guys have done that to eliminate or reduce side-effects. But, we are in the "pre-certification" stage with the insurance company and all that good stuff. I'm sure more information will come to us as we get closer to the infusion time.

My husband is thrilled to hear that, just laying off the Betaseron makes you feel way better!!!! He's hoping that "cloudy haze" will go away (and the ordeal of trying to find a spot on his body that hasn't toughened up from all the shots!).

Right now his biggest concern is scheduling the infusions so that they interfere as little with his job duties, which I think won't be a problem. I'm going to call today and find out how late they do the IVs.

Oh, and, on average, how long would you say the side-effects last? I imagine it varies from person to person, but that would be good to know an approximate average.

Thank you for the well wishes...best of luck to all the other Tysabri folks and we'll keep you posted on the progress here in the extremely wintery Midwest!

I get the feeling that the thought process in the neurology field is "if you can, get them on Tysabri as soon as there is an exacerbation...don't waste time." But, the doc did tell us that had there been no flare-up, Herb would have remained on Betaseron. Most likely, this is due to the fact that Tysabri is considered a "second line therapy" and it's so strictly controlled though the TOUCH program, due to the PML.

And, earlier I spoke to the nurse in charge of the infusion and asked her about other patient's reaction to the medication. I guess the overwhelming side-effect is FATIGUE (as if someone with MS needs more of that) but, it appears to her that, as the patient gets more infusions under their belt, the fatigue fades. Herb's biggest concern is squeezing in the therapy around his work schedule and how badly will it interfere with that. Fortunately, his co-workers are incredibly supportive which is a huge, huge help. 

Our thoughts and prayers to all!