Negative for antibodies

[cocogirl]

I had #34 today. I also was told that the blood test done last week showed I was negative for Ty antibodies. This is a huge relief!

I did have problems again during the Ty part of my treatment. I take Claritin and Tylenol orally and then they give me two premeds before the Ty one is Pepcid and the other escapes me but it is not Benadryl. I get a rush sensation and then for about 30 seconds it feels like an elephant is sitting on my chest. That passes but then I develop the worst headache and that causes more nausea.

They were monitoring me closely and the vitals were ok. They had a conference with the neuro, his nurse and his physician assitant. They told the infusion nurses that next time I will have another pre-med added and they will slow the drip down again. This time to 70. I am already spending a little over 3 1/2 hours there. They said to expect it to increase about 45 minutes to an hour more.

I do feel better this evening. I even had a boost of energy which I like.

I just hope they can stop those symptoms.

Chime in if you also have had these problems or have any suggestions. I already drink a lot of water the 3 days before my infusion. I drank 64 ozs. yesterday which means I got little sleep. LOL

Thanks for any input!

[0485c10]

I think i read someone else respond somewhere that she had difficulty with the infusion & they slowed it down for her and that helped. i cannot remember how much they slowed it down for, it wasn't a lot maybe an extra half an hour. i know at my infusion center there is a woman who gets her infusion over 4 hours to prevent side affects.

my infusion center is for people with crohnes disease getting meds for crohnes, not tysabri, and their infusion is 4 hours every other month.

the woman using ty for MS, with side affects, they just slowed down her infusion to the rate that the crohnes patients get their meds. but she does it over 4 hours every month, they do their crohns med over 4 hours every other month.

[0485c10]

my first steroids were done over 4 hours until it was determined i wasn't getting a headache from steroids, then they sped the steroids up to 1 hour instead of 4 hours after i reassured them i did not get a headache during the infusion or during the night afterward.

makes me think that headache could be from the rate of tysabri is too fast for you? they said thats what would have caused a headache during steroid infusions.

[0485c10]

they will slow the drip down again. This time to 70. I am already spending a little over 3 1/2 hours there. They said to expect it to increase about 45 minutes to an hour more.

sorry i read your post too fast, you might have been the one that wrote you slowed the infusion down?

there is a person at my infusion center that does the infusion over 4 hours, you will be above her during your next infusion. not alone in your need, another person has to do it slowly too.

[cocogirl]

0485c10,

Thanks for responding. I must say that late last night and today I have felt better than I have in 6 months. I hope they do get this figured out but either way I am staying on the Ty!