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Posted 4/17/2009 2:22 PM (GMT 0)
Hi all, I got my first Tysabri Infusion this month. I would have posted earlier this month when I got it done but its been really hectic around here.... Anyways, I am about 3 weeks into this and am feeling really good. It's amazing how different I feel compared to a couple of months ago.
I am still a little scared about the whole PML thing but I'm sure that will pass after my second treatment which is May 4.

I really don't miss stabbing myself with a needle every night. That was such a downer for me now that I think about it. Well talk to everyone later.
Posted 4/18/2009 4:00 PM (GMT 0)
Hey Tertle,
I am so glad everything went well with your first infusion. It certainly does beat the needles everyday. If you were anything like me when i first started, i think number one, having the crab drugs out of your body makes you feel good to begin with. I noticed a difference right off the bat stopping the Rebif. I thought the body aches were just the MS, but come to realize it was the Flu like symptoms they talk about with the side effects of those drugs. I do really well on the Tysabri. I just had my 14th infusion yesterday. The only side effect i get is sometimes a headache, and sometimes i get really bad spasticity in my legs that lasts 2 or 3 days. I think maybe 2 or 3 times that happened out of the 14 times i had the infusion, so i'll take it over being sick all the time. I, Thank God, have been stable since i have been getting Tysabri. And also feel really good. I rest when i need to, and try not to think about the PML. Just be cautious of what meds you take and you'll be fine. Good Luck Tertle and if you would like to talk feel free to email me or post.
Best,
Lynn
Posted 4/18/2009 4:23 PM (GMT 0)

Andy!

I am so glad to hear that you are doing well on the Tysabri.  I know you were and are worried about how you would do.  Like Lynn said, don't think about PML.  Those are really rare.  Most people do very well on it.  It is a wonderful weapon with which to do battle!!! 

Posted 5/1/2009 6:51 PM (GMT 0)
Just wanted to check in because I am considering Tysabri.  I have MS and am doing very well with it (my symptoms as far as I can tell are slow legs).  I say as far as I can tell because I have Crohn's too and sometimes I think they overlap (pains and other issues).  Anyways - my doctor can't get my Crohn's under control with the medication I can use (there are other treatments for Crohn's I can't do because it would effect my MS in a bad way).  Since Tysabri has been approved for MS and Crohn's this seems like the best option for me.  I am so afraid of the PML thing though and I am the type of person that has one pain and I think I am going to die so I don't know if I could live knowing that PML is a possibility (I would drive myself crazy).  Mostly because I have a 26 month old daughter and I just can't imagine getting PML and leaving her.  Beside PML is there anything else to consider when taking Tysabri?  Also, I have seen some information on LDN that can treat MS and Crohn's and wonder if there is anyone that has looked into LDN for MS?

Thanks,
Katie

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