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Old 06-05-2008, 05:44 PM #11
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ewizabeth ewizabeth is offline
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Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
Thumbs up My update, one year on Tysabri.

Yesterday I had my 13th infusion and I've been on Tysabri for a year. Overall, I'm very happy with it, especially comparing it to the other A,C & R that I was on before. I have to admit, I didn't enjoy the shots though I tolerated them.

I had my quarterly liver panel and all levels were normal. I feel good today. It's almost like I have a sense of well-being for a few days after the infusion, like I'm very comfortable with myself, if that makes any sense.

My walking is much better compared to a year ago. My bladder issues are gone completely. About 6-8 months ago I'd had some retention issues and I was prepared to self-cath, I even have the stuff to do it. But I haven't had to use it once.

I still seem to have overall lower blood pressure and my PCP-cardio doctor had me stop my Norvasc BP pill to see if I go to normal. I'll be so happy if I can get completely off the BP meds! I have something hereditary called primary hypertension so there was no rhyme or reason for it, it just happened. I haven't had a relapse for the past year, or if I did it was extremely mild. My annual MRI looked excellent as well. The neuro said it looks like it has even improved somewhat.

I still have a lot of fatigue, but after seeing the PCP this week and telling him about my low BP readings, he thinks that might be a big part of it because I also get lightheaded and feel faint sometimes.

Today at the office it was hot and humid, about 80 degrees in here with about 95% humidity. I wasn't doing anything but working at my desk, but I was ok with fans only!! Someone else suggested turning on the AC! Usually I turn it on the first hot day and it stays on all summer.

I still get weak from the heat if I exert myself at all, but I guess I can deal with that. I noticed today that I mix up my words more the day after the infusion, and I wasn't the only one that noticed. I suppose it's partly because the infusion makes me extra sleepy?

Yesterday I scared the new infusion nurse I think. I must have been one of her first infusion patients at the clinic if not the first. My veins were being shy because I hadn't had lunch yet so she couldn't get the needle to go in correctly. When this happens, I get faint. I must have looked terribly pale. She checked my BP and it was 60/40. She looked so scared, I felt bad for her, but that happens to me if there's an infusion incident. I used to pass out when I donated blood. I did my best to console her, the poor girl! Next month if it's a lunchtime infusion I'm going to eat on the way there so maybe it will go easier for her. I know she's really sharp because I could just tell, and she's worked at the ICU in a big Chicago hospital as well. I just hope she doesn't dread seeing me walk in the door from now on.

Oh well, I think that's it for me until next time.
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