Sunday, October 08, 2006

sorry to keep everyone in suspense....

Well I did end up choosing Tysabri and went for my infusion on the 22nd of September which was a Friday. Came home feeling okay I mean I get infusions every month. Later that day and on into the early evening my back was aching something fierce but thought not that big of a deal because I just cleaned my house more than normal all week long. Saturday when it was hurting real bad and I needed some of my Gabapentin I called the dr's office and got a call back with lighning speed because I was told you can not take ANYTHING with Tysabri. You can however take symptom management drugs THANK GOD. Well of course the gabapentin nor the million mg. of Ibuprofen I took helped my back pain at all and it just kept getting worse and worse. So Monday I called my dr's office and explained it all to the Tysabri Nurse that my back was aching all weekend she said yep you have the number 1 side effect. I was ok and that would be what exactly because in all the info on it it says nothing like that. I just had to sign billions of papers telling me the side effects. She said oh honey I'm sorry to scare or confuse you the number 1 side effect is a UTI. Oh duh i knew that too just didn't even think of it. So she told me to go to the hospital they'll test me I'll take antibiotics and all will be well again. BULLSHIT!!!! Needless to say there was nothing wrong with me found in any of the tests they just told me to go home and drink the appropriate fluids and you'll be fine tomorrow. again BULLSHIT!!!! Now the hospital that I went to doesn't really deal with MS on a regular
basis like the hospital my MS clinic is at so got an appt for Tuesday. Go there get the norm Neuro evals to be told that I'm relapsing and they wanted MRI. Ok whatever Mri showed 12-15 new big enhancineg lessions, They said they wanted me to be admitted to hospital and on sterods days ago. I was terrified because thought that you could not do anything with Tysabri. So wrong agan on that steroids are ok if and only if you are having a relapse. So 4 Mri's later which by the way showed no signs of PML what so ever, 5 days later feeling almost my MS normal I guess the only residual side effect left is my vision which is horrible so excuse the spelling errors. I am going to get Tysabri again on the 20th of this month and will get Mri next day and see Dr same day.....wish me luck....

7 Comments:

Blogger Linda D said...

Sorry to hear about your Tysabri experience...if it's any consolation, I developed severe arthralgia after BOTH of my recent infusions...same thing...was told that it's a side effect. STILL...the arthralgia is better than the 101 temps I started spiking after Avonex!
Hang in there, kiddo...and I will too.

Linda D. in Seattle

2:04 PM  
Blogger Jaime said...

Amanda,
Sorry to hear of your recent side effects from the Tysabri. I am with Linda however in thinking it can't be any worse than the side effects from the Avonex!

I hope things get better for you real soon. You will be in my thoughts and prayers. Please take care of yourself. You know where I am if you need to talk.

Jaime

3:22 PM  
Blogger Vivian said...

Thank you for letting us know how you are. The whole Tysabri incident really sucks. I will be praying that the next infusion goes more smoothly and that everything will start looking up. For now sending huge HUGS.
Viv

10:41 AM  
Blogger mdmhvonpa said...

"5 days later feeling almost my MS normal "

Sad to hear that it is a good thing ... urk. Hope things go better next month!

10:44 AM  
Blogger personallog! said...

My thoughts are with you always.

Dave
x

9:02 AM  
Blogger Charles-A. Rovira said...

I recommend Rebif but that's basically damning with faint praise.

All these drugs screw around with the immune system.

Its a case of which one is the least harmful.

Hope you get better soon.

Want to keep yourself entertained while you're lying there, waiting for one set of meds or another to wash out and/or of your system?

Check my podcast http://www.MSBPodcast.com

3:55 PM  
Blogger mdmhvonpa said...

POKE****

You ok?

8:37 AM  

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