I had my 28th infusion with the normal side effects for me......headache, achy feeling all over, nausea, abdominal pain and the chills. I'm always cold

My neuro and I spoke in October about having infusions every 8 weeks instead of every 4 weeks. She doesn't think it's a good idea to wait that long. But, she is hoping that there will be another alternative to Ty soon. I attended a seminar recently and the 2 neuros there spent a lot of time discussing Ty. They are both having their patients who have been on Ty for 2 years go every 6 weeks instead of every 4 weeks. My next infusion will be in 5 weeks due to the fact that my infusion center will be closed for the New Year and a few days afterward. I'm going to see how it goes. In the past when I've waited 5 weeks between infusions I didn't have a problem...no wishing I could have my Ty "fix" already. So, if I don't have a problem waiting 5 weeks between infusions I'm going to try 6 weeks between infusions. BTW, Biogen sponsored the seminar.

At the infusion center I go to they do take my vital signs before the infusion but they only will do blood work every 4 or 5 infusions and although they ask the necessary questions before the infusion I rarely see the oncologist who is there. He does check my chart every time I'm there because I have heard him ask the infusion nurse for it. But, apparently since I'm doing ok he doesn't feel he needs to see me very often. That is going to change. My insurance has told him he must see me every 3 months or they won't pay him....LOL

I'm praying for some type of test to see who is vulnerable to PML and who is relatively safe. Ty has been so good for me that I want quality of life more than quantity of life. I'll never have my "old" life back...the life I had prior to the severe exacerbations. But, I'm able to exercise, walk 1 1/2 miles without difficulty, drive a car again and see friends when I want to. That's better than being in a wheelchair and completely dependent on my husband!!!!!!!!!!!!!

My only concerns other than PML are that I'm always cold now, if I hadn't been a vegetarian prior to the infusions I would be one now....I can't stand the smell of meat, poultry or seafood!!!!!!!!!!........and between the infusions and trying to get back to California on a regular basis to see my grandchildren I feel like I am always recovering from something.....the infusions or the visits to California which leave me exhausted I can't move back there because I can't sell my house or even rent it with the economy the way it is. And, I live in a retirement community which means less people are qualified to live here. If only I knew what MS would do to my life when we retired here 8 years ago....LOL I had always taken it for granted because I always went into a full remission. And the severe exacerbations had been few and far between. But, the exacerbation in 2003 was the one that broke the camel's back. I'll never take anything for granted again.

Life is better with Ty. So, until there is something else out there for me I'll take my chances and stay on Ty. But, I'm going to try and cut back on the number of infusions every year. If waiting 6 weeks between infusions works for me after several infusions I will attempt to wait 7 weeks between infusions.

Rumour has it that the JC Virus Antibody Assay will be available in Q1 2010 (Maybe even January). This assay will allow the identification of patients who have not been exposed to the JC Virus (No antibodies) which should mean a very low risk of PML. Per the companies, approximately 50% patient are JC Virus Antibody negative. Big effort right now is working with Key Opinion Leaders on treatment guidelines for patients who test positive for JC Virus Antibodies.

So it looks like the Ty is what's making me cold. I just took 2 Advil's and will see how that works for chills. I think its helping already. Iv'e been tired during the day lacking motavation + little more back pain then usual. I hope I get use to Ty like Rebif after a while. What I loved about Copaxone - zero sides and worked great for 2 1/2 yrs - then poof. I hoestly feel warmer now from the Advil. We'll see. Generic brand too. Ibu is Ibu. 500 count for $15

Edlife, my infusion center doesn't provide blankets. I bring my own nice warm blanket each time. I was still so cold for my last infusion I think I'll bring 2 blankets for my next one. I have found that I'm almost always cold now. So I wear lots of sweatshirts and layers of clothing. Tylenol usually helps me with the achy feeling I get after the infusion but I've never noticed an difference with feeling cold My neuro prescribed Provigil for the fatigue. I've found that 1/4 of a tablet will keep me alert for approx 4 hours. I've never used the full dose which is 100 mg twice a day. I use as much as I need on any given day. I've never needed more that 1/2 a tablet. Of course, I do enjoy a nap in the afternoon...LOL

Good luck, Edlife!!!!!!!!!!

I have had a considerable improvement in my balance, better than it has been in over five years!! I'm actually going on walks with DH and Montana. This drug is marvelous!!

Maryann, I am so happy for you!!!!!!!!!!!!!!!!

DITTO MaryAnn!!! I KNOW I posted to you but it seems to be lost somewhere, so congrats again!

On the msworld site a poster named smallie wrote on his home page that a neuro told him (I think neuro is in Israel) that there are 3,000 people on Ty over 3 yrs with 1 case of pml. I do not know how many infusions as 13 possible infusions yearly would be 39. I had 38 in 3 yrs; will have #41 end of Dec.
Linda

Maryann thats great news! And Shyna thanks!
Why am I so punctuated? Because side effects are about gone!
Shampood my patio carpet today (which isnt easy regardless) and feel ok.
Linda as far as pml with me goes, im screwed without Ty anyway so what the hay right?
If im ever in a hospital bed from Ty, I'll call the people at FDA I spoke with about the hormone Estriol they pulled in 08 when they sided with Wyeth and I'll put some guilt trips on. Lets hope it doesnt happen. Estriol was evaulated for MS but its free compared to Ty so maybe thats why it just ended? Estriol was used for menopause..till Wyeth made it known. Still is outside USA.

Link to an MS Blogger who has a direct link to the Senior VP of Drug Safety and Risk Management for Tysabri - good chance to get our needs for info identified

http://www.everydayhealth.com/blog/t...-want-to-know/

Chris