Living With MS

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

Wednesday, February 20, 2008

My Tysabri Diary...

I had 18th Tysabri infusion today (why is it that each of my Tysabri infusions lately have been when it's pouring rain outside? Oh yeah, it's winter- heehee)..

I learned that my small infusion center currently has 10 Tysabri patients that they are infusing, and to the best of the nurses' recollections, none of them have had a relapse since starting Tysabri.
My infusion, as usual (thank goodness) was uneventful and my wonderful infusion nurse got me on the first try (Lordy, I love it when I don't have it to endure multiple sticks).

But mainly, what I wanted to pass on was that I had the opportunity to speak with a young MS patient and her mother that had stopped by the infusion center to say hi to everyone as they were on their way for the young girl to have her six-month neuro appointment. When the young girl and her mother found out that I was there having my 18th Tysabri infusion, they asked the infusion nurses if I could possibly speak with them for a while (this is the young girl that I previously told all of you about that had two (I think) previous Tysabri infusions and was feeling kind of depressed as she had not seen any improvements in her condition-that was when I asked my infusion nurse to pass on a message of hope to her when she saw her next).

The young girl (I believe she said that she was only 19) was very shy, but her mother wasn't. Her mother told me that even though her daughter had been diagnosed with MS at age 16, had tried all of the ABCRs, with the exception of Rebif, just continued to get worse and ultimately, wound up in a wheelchair two years ago. Her mother also said that her daughter had various symptoms of MS throughout the years, but none of them had made the connection that it was MS, until she got the final diagnosis (this is very common among MS patients as they look back prior to their diagnosis and can see the various symptoms that they were trying to attribute to other circumstances).

Are you ready for this? Her mother told me that her daughter is now able to take six steps with a walker, and is determined to get her driver's license! Also, her tremors have all but disappeared, and the strength is returning to her hands where she can almost write her name again. Just her balance has not made any improvement, yet. They are both ecstatic about Tysabri, and feel so blessed that they are able to have this medication available to treat her MS.

The young girl told me that she has had no side effects whatsoever from Tysabri, other than a slight headache that lasts the day of her infusion. They told me the name of her neurologist, and I knew who she was (her doctor happens to be my neurologist's partner).
And the best part was the mother told me that two of her daughter's legions on her brain have all but disappeared! Her daughter's face lit up like a light bulb, she was so happy!

I mentioned to them both that because she is still young, her body has a fantastic opportunity to heal itself (with the help of Tysabri keeping most of the inflammatory cells from attacking her central nervous system), and with her positive attitude and future Tysabri infusions, anything can happen! But I reminded them that Tysabri is not a cure for was designed to try and prevent further relapses and their accumulating disabilities, and to slow the disease process down. What the daughter is experiencing is icing on the cake (improvements). And for some patients (like me), Tysabri is able to keep their MS stable (I have not had a relapse in over a year since restarting Tysabri in October 2006).

I also told them about my experiences with Tysabri after my very first infusion ever in early 2005.
We talked about other things regarding Tysabri/MS/PML/the ABCRs, etc., and just before they left, her mother asked me how long someone can take Tysabri.... I said, "Well, I am on my 18th infusion, and so far so good, so I don't see any reason why your daughter would ever have to stop Tysabri infusions unless she developed neutralizing antibodies to Tysabri, unless she became highly allergic to it, suffered severe side effects from it, or until a superior MS medication came along and/or a cure for MS was found, but I am not a doctor and you should double check with Dr. X.". They both threw their hands up in the air and yelled "Yes! Thank you God!", and then they hugged each other (you would not believe the smile on my face when that happened).

Well, it's time for pizza and mudslides. I hope everyone has a wonderful evening....All my best,


Love, Lauren :)

Saturday, February 16, 2008

My Tysabri Diary...

I was not going to address on my blog the negative "melanoma/Tysabri" articles that have been circulating on the Internet, but I have been receiving so many e-mails from other MS patients and also comments on the different MS forums that I visit daily about these articles.

Here is just a small snippet from the responses that I sent to many of the different reporters/articles that were written:

"Your article was very disheartening to say the least because you failed to mention the following and your article does not tell the whole story:

the drug have caused melanoma in these two MS patients? It's possible", says Timothy K. Vartanian, MD, PhD, chief of the MS division at Beth Israel Deaconess Hospital and associate professor of neurology at Harvard Medical School. Vartanian and colleagues report the two cases in a letter to the Feb. 7 issue of The New England Journal of Medicine.

"The important thing to remember is that Tysabri remains by far the most effective FDA-approved drug for treating relapsing forms of MS" stated Vartanian. "There are adverse effects associated with all medications..."

According to the WebMD article below, both of the women treated by Vartanian and colleagues had existing moles. In fact, one of the women had a family history of melanoma. Her father and a brother had melanomas; both of them remain alive and well.

The report from Vartanian and colleagues does not prove Tysabri caused these patients' melanoma.

The jury is still out, considering there are over 21,000 MS patients currently on Tysabri therapy, and I am one of them, having had 17 Tysabri infusions so far, with not one single relapse nor any disease progression in over a year".

Any MS patient with a history of melanoma in their family should discuss this with their neurologist. They should regularly be evaluated by a dermatologist if they have any mole on their skin and are on Tysabri therapy. These are only my opinions of course, and I am not a doctor. Here is an article from WebMD that addresses these issues in an unbiased manner:

Did these articles scare me at all? Heck no! All MS patients have to do is have as much knowledge about Tysabri as possible (and discuss your concerns/questions with your neurologist) in order to fend off these types of "sensationalistic" headlines that precede these biased and slanted media stories.


Love, Lauren :)

Friday, February 15, 2008

My Tysabri Diary...

Good morning everyone...I hope everyone had a wonderful Valentine's Day yesterday. Here is an incredible e-mail that I received late last night from a friend of mine who is also currently on Tysabri therapy (I have her permission to post same)... note what her neurologist told her and where he is from... it should knock your socks off, and give tremendous hope to all MS patients currently on Tysabri therapy! And to my friend Matt, congratulations on your engagement!

Subj: Long time ....
Date: 2/13/2008 11:03:50 AM Pacific Standard Time
Sent from the Internet (Details)

Just wanted to let you know that I'm still loving Tysabri (just had my 17th infusion!!)

I had my meeting w/ my neuro @ Hopkins last month after my infusion and had incredible news I thought you'd love to hear....

I told him about getting all the feeling back in my legs and also about my improved balance. Then I told him I was disappointed that my cognitive problems hadn't improved, but I was still hoping.....He listened and smiled.....then he said "Well, you've experienced the first wave of improvement, most people have that after 4-6 months of treatment. What MAY happen next is a second wave of improvement that we're now seeing in patients that have been on Tysabri for 18-24 months. We actually believe that YOUR MYELIN MAY START REGENERATING!!!". I almost fell off the examination table!!! My MRI looks better NOW than it did 2 years ago. Can you believe that????

SO - you and I are DEFINITELY on the right drug!!! I thank my lucky stars every day that I am on this stuff!!!

Have a fantastic day!!! ....Good luck!!!!


Is that fantastic or what?!?! I am soooooooooooooo happy for her!

((((hugs to all))))

Love, Lauren :)