Amy, I am glad your mom did well!
I went back over the chart I had referred to. It was presented by Dr. Timothy Vollmer of the RMmsC. It showed that Tysabri has a risk factor of 4 and Rituximab a risk factor of 1. I just wanted to check on my info and make sure I wasn't stating what I had learned at the seminar wrong.
Linda

Today was my 67th infusion I did have 1 problem-I forgot my book, first time in 5 yrs 7 mths
Linda

Hey Linda,

Congrats on the 2 JCV negative tests. That must be a HUGE relief.

And wow, you are up to #67? Sounds like things are going very well for you.

Natalie

Hello all, having my first flair-up in 2+ yrs. cause I got off of Tysabri about 5 Mo. ago. It was doing such a fine job for me too!
But.... I've had 18 or 19 skin cancers cut off in the last few years which ain't no fun either, My M.S. Doc says the Tysabri exacerbates skin cancer in some people, so he said it was time to quit. After a few mo. break I went on Copaxone (3 mo. ago). Its not working so well!!!!!!!!

TWO QUESTIONS......
Anyone else ever have, or hear of a skin cancer isssue with Tysabri?

Anyone doing a lower dose, or less frequent infusion of Tysabri?

I REALLY FELT BETTER WHILE USING IT!!!!!!!
But the Frankenstein look dosn't really work for me either.

All comments welcome, I'm new here.
Dave

Hi Dave, WELCOME
I had 3 skin cancers - basal cell - removed a little over 6 months ago. My body has always made "things", so I get a dermatology body check every 6-12 months. I have been on Tysabri for 5 1/2 years. I do not have knowledge about skin cancer as a side effect of Ty. Maybe go to Tysabri.com for the side effects.

Best wishes
Linda

Hi Dave, welcome to Neurotalk!! Sorry to hear about the skin cancer problem. I get Tysabri every 8 weeks and it still works for me...after the 17th infusion I switched to the 8 week cycle because of too many infections. And I'm going on 4 years on it total. I have heard there are more problems with Gilenya and skin cancer. I do know there are a couple of new drugs that will be out in a year or so. One is a pill by Biogen and my doc said the latest great results blew everyone out of the water. I hope you can find something that your body can handle. Good luck!

Yeah! Just got back my third negative JCV virus antibody test (done every 6 months). I'll just keep plugging on with the Tysabri!

Hi everyone

I have just found out I am JC positive, and I don't know what to do. I am up to three-and-a-half years on Tysabri. I don't want to change meds because Ty works so well for me - but the alternative (PML) is pretty scary.

I gave up after 8 miserable years on Beta, and for some reason I find the thought of Gilenya really scary (I already have low platelets, and fear that they will be brought down as well as my white blood cells - plus, I work in a classroom where I can't control their coughing/sneezing, colds and flu).

I really need to get lots of info, and lots of opinions on the best course of action for me so all input would be greatly appreciated.

Thanks so much

Lyn

Congrats Natalie
Lynn, wish it was better news for you. When I had been on Tysabri almost 4 years my jcv test came back positive. I stayed on Ty. Then when I had the test done at almost 5 years my test came back negative . Doc said one of them was false but he still considered me positve. I had another test done a couple months ago at Quest labs-it came back negative-sooo, it appears the test done Nov 2010 which was positive was false. I am only telling you my story... You and your doc have to decide what is best for you!

Good luck and best wishes
Linda

Last Fri was my 68th infusion YAY!! Good nurses finding veins first time