possibly joining the ranks of campath testers...

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

possibly joining the ranks of campath testers...

Postby sara33 » Thu May 28, 2009 8:15 pm

hello all. i'm sara, 33... i will find out on the 15 of june if i get the campath or the rebiff. i'm actually hoping for the camp. as i've been on rebiff before with nothing good of it... hence why i stopped taking it. actually i've been on everything that you can inject into yourself... but keep having these crazy relapses. so my doc suggested this trial. why not? 8)

anyhow, i just found this place online and thought i'd intro myself. today sucked b/c i had to try to explain to my little girl who is five why i can't go on her zoo field trip tomorrow. (all that walking in the hot sun and not being on any meds now for three weeks... i don't want to relapse now, then they might not let me start!)

anywho, i am married for ten years to my husband who is lovely and tries to get it, and also have a ten year old son. i used to be a nurse in my other life before ms and bipolar i understand way too much at the doctors offices. now i'd just like to make it through a day without being exhausted at noon! i suppose that is it. greetings to all:) and to whoever posts the onion news, those are hysterical!
sara
User avatar
sara33
Family Member
 
Posts: 30
Joined: Wed May 27, 2009 3:00 pm

Advertisement

Postby CureOrBust » Thu May 28, 2009 9:02 pm

Welcome.

I hope you get onto the Campath arm like you wish. I tried for the Campath trial, as rebif not only failed for me, but I actually blame it for more.
User avatar
CureOrBust
Family Elder
 
Posts: 2908
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby patientx » Fri May 29, 2009 11:37 am

Hi Sara. Hope you get the Campath side.

A question, if you don't mind. Can you generally describe what your relapses were like? Were they documented by the doc? I'm curious, because I've been trying to figure out what the criteria is for getting into the Campath trial.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby sara33 » Fri May 29, 2009 2:57 pm

oh good! a response:) i hope i get on the campath side too. i was on rebiff once before and hated it. the first time i had this period that didn't end for six months! and the second time they could not determine if it was rebiff or an antidepressant(that was also new) that made me break out in hives. what are my relapses like? first off, i am very tired all the time anyway, but before a relapse i will start to fall asleep when i just sit down for a minute. my feet and legs will lose all feeling, then a few days later my skin will feel like it is burning when anything touches it. yet it is still numb. weird, yes? i often have double vision right before, or a few times i've had optic neuritis. i've had that in both eyes, but not in both at once yet, thank god. in general, very weak feeling, dizzy, can hardley walk, much less walk straight for any period of time. my last relapse i was numb all the way up my back. and last year i had one with cognitive changes that was really scary. they did a ct scan to make sure it wasnt a stroke. and my pupils are permanently different reaction times.
so, hope that helps. thanks so much for welcoming me here! i totally agree about the rebiff being possible for worse. not to mention it stings like heck! in the meantime... i'm still praying for the camp. it's one out of three here at the u of m site...
User avatar
sara33
Family Member
 
Posts: 30
Joined: Wed May 27, 2009 3:00 pm


Return to Campath (Lemtrada, Alemtuzumab)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service