Edife, hope you do at least as well on Tysabri as I have-I just had #40
Best wishes and good luck!
Linda

Wiz: I'm the only one here who drives, so not a lot of options. Your DH may not say it, but I'll bet he's not complaining about not driving to infusions either . I hope the change in meds works out great for you, and Grammie's right ~ Daisy's almost TOO adorable!

Edife: Glad the 1st infusion went well! I hope this does the trick for you.

Thanks. 3 days later I still have Rebif foggy head/slight pain.
Question I have is does Tysabri make poop smell worse? I think mine does.
Sorry if that's not a "eye friendly" question but i'm wondering.
I also get chilled more then usual. Haven't called to ask if that's why I was sent a blanket.
Can't say feeling/strength is improving or worsening yet. Let's hope.

Congrats on your first infusion Edife.

Glad to hear Biogen is sending stuff to everyone. I must be on their list of naughty peeps cause I don't get presents from them. They must be sick of seeing my name in their inbox all the time!

# 33 down!

No problems, no concerns, as usual.

Infusion was followed by a LONG appointment with my neuro, his increasing concerns and request that I entertain thoughts of a drug holiday, my reassurances that the holidays we already have in the next few months are enough for me, discussion about the drugs in the pipeline, CCSVI and medical marijuana laws.

We agreed that I will have my next three infusions, he is going to a peer conference in January and we will met again in February and discuss any new information.

I left with an order for blood work, MRI, and a medical marijuana letter.

RW--congrats on #33. I'll be interested to hear what your neuro says in 3 months. Did his concern and call for a drug holiday scare you? Send me a PM--I would be curious to know what he said about CCSVI.

Edife, everyone hopes to see sx reversed by Tysabri and if that does occur it usually around 4-6 infusions and then might be so insignificant you almost miss it. Tysabri claims to slow/halt progression by 66%, for better MRIs and less exascerbations (will somebody PLEASE tell me how to spell that word )

Linda

Polar, I just had my 28th infusion and it always makes me very sleepy. I usually fall asleep during the infusion, sleep all the way home...my husband drives me to and from infusions because of the sleepiness.....and then I sleep on and off for several days. I thought I was the only one who was effected by Ty this way...LOL Congrats on #9. I hope it works as well for you as it has for me.

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.