Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Friday, December 24, 2010

55th Tysabri infusion report and a Christmas message from me...,

Hi everyone, I completed my 55th Tysabri infusion on Tuesday, all went well as usual and the infusion center where I go was rather busy..., what was interesting is that two new Tysabri patients were there when I was. Unfortunately, the one sitting closest to me was in a very bad mood (I got the feeling that she was being rather negative about her MS) and the other Tysabri patient was too far away for me to visit with her. The one patient in a bad mood had a very aggressive form of MS, and she was diagnosed only six years ago with the inability to walk and her tremors were rather severe.

When I told her that she might see some improvements in her symptoms between the fourth and sixth infusion, she seemed to have a little bit of hope, but I also believe that she was expecting to see miracles right away. When she asked me how long I have had MS and how many Tysabri infusions I had received, I told her I have had MS for almost 36 years (it will be 36 years on January 1), and that I have had 55 infusions so far and my MS has remained stable for more than four years, with no new relapses during that time. I also explained her that because I've had MS for so long, my damage was probably permanent, but she can always hold onto hope for improvements because she was still in the early stages of her disease. After that, I basically left her alone so she could think about what I had told her, and because she really did not feel like chatting. I tried to keep the conversation upbeat and short..., This disease can be so devastating emotionally for some patients that have a severe form of it and it makes me very grateful for what I do have and have had for so many years.

On a lighter note, I want to wish everyone a very Merry Christmas and a happy New Year -- may each of you hold your loved ones dear. Below is a link to a video by Rascal Flatts entitled "I'll be home for Christmas" which I am dedicating to all of our overseas servicemen and women..., as I am sure that they wish they were home with their families this upcoming holiday (I also hope you enjoy Rascal Flatts amazing harmonies).

Merry Christmas to all and to all a healthy and prosperous New Year!

Saturday, December 04, 2010

HUGE breaking news as it relates to Tysabri!

Hi everyone, I just saw this on a MS message board as it relates to Tysabri treatment/JC virus/development of PML:

"There's potential new treatment for PML that I haven't seen posted on the form yet that's good news for Tysabri users, in the patient treated with this new treatment that developed PML it “The combination therapy succeeded in eradicating the polyomavirus JC, the virus that causes PML, in less than two weeks following initiation of CYT107 treatment, and four weeks following the introduction of CMX001”. XXX/Jim

I then posted the following reply:

"Thank you Jim for posting that information, this could most definitely help MS patients that might develop PML from the JC virus being activated, and I also wonder if the treatment (which is an antiviral treatment) could be used to eradicate the JC virus altogether if a person tests positive for carrying the dormant JC virus by having antibodies to the virus show up (in other words, before it could even develop into PML). If so, this would put at ease the fears of any patient on Tysabri that tests positive for carrying a dormant form of the JC virus in their system. I can hardly wait for more data to be released regarding that matter."

Why hasn't Biogen posted anything about this before? Considering they already have a very sensitive test which can determine if a patient carries the JC virus (because it tests for JC virus antibodies), combined with the effective antiviral treatment mentioned above, can you imagine how many MS patients would no longer be afraid of using/starting Tysabri, would not longer be afraid of developing PML if they tested positive for carrying JC virus antibodies, and would not have to even consider stopping Tysabri up to the two-year mark, etc.? I'd be shouting this information from the rooftops!

Jmho..., Lauren