15th infuson not good!

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

15th infuson not good!

Postby iloveangels213 » Mon Nov 17, 2008 9:44 pm

I would like to hear from anyone else who has had this problem with an infuson.I took my 15th infusion at the end of Oct.I got in my house that night and I could barely make it through the door.I was so weak and dragging.Well in the 2 weeks after that it was anightmare,stabbing severe pain in joints behind eyes in different places where I never had pain.I can barely walk still all I can do is shuffle my feet.I have a homemaker that even says that I have gotten worse in the last few months.My balance has been getting bad even before the last infusion.I just still feel terrible I have to get another in about 4 days I,m scared to death.When i did my TOUCH test before 15th infusion I had to get checked due to my declining balance they ok'd me to get it then a few days after Igot infusion I called doc and told them how bad I was they said they thought it was the fu cuz the day I got the infusion I didnt feel well,now my question would be then why did they give it to me if they thought I wassick???If anyone has anything like this going on please put up a new topic so we all cansee it.TY
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Postby iloveangels213 » Mon Nov 17, 2008 10:14 pm

I also forgot a very important thing that happened after my last infusion that scared me where I almost went to ER ,I was having pain in my back that went thru to my chest and made my breathing different myboyfriend just reminded me of that.
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Postby CureOrBust » Tue Nov 18, 2008 5:02 am

What did the physicians say when you told them all this?
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Postby AutumnRed13 » Tue Nov 18, 2008 1:17 pm

I am so surprised that they gave you your treatment when you were ill.

When I went to get my 6th treatment, having gone through the usual monthly checklist - they withheld it as I was not fully recovered from a long bout of bronchitis. The neurologist and staff expressed concern that if I received treatment while still sick it could lead to a pneumonia.

The nurses and my neorologist recommeded that I first go back to my regular MD that I could not receive the Tysabri until my lungs were clear and I was clear of any infection.

I went to my internist who gave me a script for a 3rd round of antibiotics and sent me to get a chest Xray for safety sake.

Luckily the 3rd round of antibiotics cleared everything up and chest Xray came up clear. After a week I was administered the Tysabri.

Were I get my infusion they are very diligent about going through the checklist. Even the pharmacist comes up to make sure everything is good for administering the Tysabri. The nurse always asks "are you sure your MS symptoms haven't gotten worse since your last treatment?" and "do you have any new symptoms?", and "have you been sick" etc. etc. If someone answers yes - to the questions, they with hold the treatment until you are clear.

I would have to say that my biggest complaint with the med so far would have to be the incredible tiredness I feel right after and for the following few days. The same day I cannot hardly keep my eyes open.
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15th infusion

Postby iloveangels213 » Tue Nov 18, 2008 3:47 pm

yea all my doctor said was that they thought it was a flu bug i told them before infusion that my balance was getting terrible,my reg.doc was not there one of his new sidekicks came in did a few neuro tests on me and then he released the ok they are still saying flu bug i never felt that way after the other 14 i think i need a new doc that monitors this better i guess all i am doing is waiting for them to cal me bk too .today my infusion nurse said that where my pain was in my back sounded like the liver,hellooo thats not good either they want me to try one more time to see what happens i think i need a liver test then or something.They have me at my wits end.What i wanna know is can i just stop like that???
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15th infusion

Postby iloveangels213 » Thu Nov 20, 2008 11:39 am

Ijust found out that I have mild COPD yikes do I INFUSE TOMMORROW OR NOT???I
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Postby AutumnRed13 » Wed Feb 11, 2009 10:14 am

I haven't been on the site in a while. Just curious if you continued with the on Tysabri. It is interesting you a possible liver issue. Did you get a liver function test done yet?

I am coming to find that the where you get the infusion treatment seems to be very important. The pharmacist along with the nurising staff at the site where I get mine done decided on my very 1st day of treatment that I would get my LFT done every other month. They have continued since. So far so good now.
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