Tysabri and how is it going?

[Nicoly3467]

Hi-I was wondering if anyone can share their experience with Tysabri and how it has worked for you? I would love to hear your story.

I tested positive for JC virus but do not know index number yet (still being cultured). I was told the higher the index number, the higher the risk of PML.

My Neuro said if I go on this in the future after other therapy tried, they will take me off it for a period of time, then put me back on it again to lower risk of brain infection (PML). Oh boy, lots to consider!

Thanks!

[ru4cats]

I will have my 60th infusion two weeks from tomorrow. I am JC-. I absolutely love Ty and actually look forward to my infusions since I can relax and read a good book. I have no side effects: none, nada, ziltch. Day 1 is just like day 28. The damage done before I started Ty continues, but I believe Ty is keeping any new symptoms at bay. I am at a disadvantage in that due to my age, almost 63, I am dealing with age issues in addition to the MS; they don't complement each other. My neurologist did warn me about this. Depending on your age, you might experience some recovery. My reserves were gone by the time of my diagnosis. I wish you the best in your journey with Ty.

[RockysMom]

I've had three infusions now and I can safely say that I had a fairly dramatic improvement with these three infusions. I was walking in PT for the first time in 16 months. In the parallel bars, 8 feet at a time, 40 feet maximum for one day and I did this several days. But that was only my goal and it was not the goal the therapists had for me.

I wanted to stay in rehab until I had been on Tysabri for three full months but I got cut by the therapists and they sent me home pretty much right after my third infusion. Now I'm waiting to start home therapy which may have to wait until next week. So I'm going to try to buff up at home.

I guess at this point, I'm the only one on my medical team who has any hopes for me.

[Windwalker]

I will be getting my 4th infusion on Monday.
I'm drawing no conclusions at this point. Side effects have been mild and it certainly has not degraded my strength... although I seem to be weaker right before and after the infusion date. I'm hoping to see the side effects subside after 6 infusions and will start looking for some measurable improvement at that point.

[Nicoly3467]

Thanks everyone for your replies. It sounds like Tysabri is working well for you. I am very happy to hear that.