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.