Hi Pat, I just had my 61st Tysabri infusion today; I am jcv+. I am on Medicare, 80% is covered thru part B and 20% picked up by my secondary.
Best wishes
Linda

How are you all feeling day to day, on Tysabri. Especially those who have been on it for over a year or two. Have your MS sx deminished, gone away, a little better, a lot better or NOT?

Do you have side effects from the TY and if so, are they really managable? Do you have the JCV antibodies? Are you afraid to take TY, but because of your great results, you are willing to take the risk?

I hope you don't mind my asking. I think about you all often and come to read here, to see how you are doing, but usually, your just counting off your infusions. How do you really feel?

Hi Sally, thanks for checking in and asking! I love my Tysabri. I haven't had a relapse yet since my diagnosis in Sept. 2007. I started Tysabri in June 2008. I attribute my quiet MS to the drug. I feel fortunate --tested negative for the JC virus antibodies. But I saw my doctor last week and it has been 6 months since I got tested. He wants me to have a second test. I have to confess it scares the crap out of me, to have it again! If I do test positive this time (either because the first one was a false negative or because I actually caught the virus since then) I will be switching to Gilenya. The negative test gave me such incredible peace of mind. I stopped worrying about PML and stopped scouring the internet obsessively for Tysabri updates. I don't want to go back to that.
Cheers!!

Hiya Sal!
Still doing well on Tysabri here, for me, it's still a miracle. No new lesions, no enhancing lesions, no further disease development. I still say if it had not been taken off the market back in 2005, I wouldn't have any residual symptoms!
I still deal with fatigue and spasticity, but they are mostly controlled with Provigil, baclofen and tizanidine. My doc keeps me well stocked in all of the above.
Tested twice for JCV antibodies and still negative, so I am not concerned any more than I was before I was tested. I'm sticking with Tysabri. No side effects, no problems, no concerns!
Headed for # 60 soon!

Hi Sally, even tho I tested positive 1 year ago I decided the benefit outweighed the risk for me. The MRI I had a few weeks ago showed no new or enhancing lesions. My balance, fatigue and endurance has all held at better for almost 5 years and thank G-d progression has halted. My new neuro at the RMmsC agrees with me staying on Ty. As for side effects; none! I've been on the med for 5 years 2 months, my sx started diminishing between 4-6 months-my R-leg did not get better but, I went from 2 canes to 1.

I was tested again last week for the stratify trial. I asked why they will continue testing me since, I was positive. He said it may have been a false positive-wouldn't that be lovely

Thanks for being nosey
Linda

I had #31 last Thursday -- Forgot to post! Nothing new to report. They did take blood for a second JCV antibody test. Here is hoping it comes back negative a second time!

I'm doing awesome on Tysabri. I've had my diagnosis for ten years. I started taking Ty four years ago. My fatigue is largely gone, my strength has returned enough for me to train a horse, work, raise my daughters and separate from a marriage that had become abusive. On the rare occasion when I remember to pray, I thank god for modern medicine and for Tysabri and for the full and vital life I've been blessed with.

Katty

Hi all, sorry I have forgotten about this site
Dec 2nd had #62-great nurse, got me on the first stick, all was good Dec 3rd my 63rd birthday
Nov infusion blood was taken for the stratify study. Nov 2010 I was jcv+ Nov 2011 I am jcv- YAY!!! I know one is false-hoping/praying it's 11/10.

Katty, I am so happy for you!!

Happy Holidays!
Linda

Wow Linda! You were negative on the second test? I hope the first was wrong. It must alleviate some of your anxiety. What did the doc say?

Hi my name is Kathy, just dx with MS at age 64, but had it for years, My nero is going to see me on Tuesday to talk about meds. One he wants to talk about is Tysabri,he gave me the JC test but we have not got the results back yet. The doctor wants me to come in and ask questions, he says anything I want to know about treatment and let him know my systems that are my biggest concern for me. I will do some searches on Tysabri and read your post. I have lots of brain lesions and bad legs. Now I seem to be tired all the time, but manage to go to work, Would like to know if this drug helps with these types of systems? Kathy