Search found 76 matches

by k6ristin
Fri Mar 05, 2010 7:18 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Another alemtuzamab labrat
Replies: 84
Views: 19967

0 lymphs

I think maybe there has been a mix-up; because it is well known that campath has sustained, prolonged suppression of our lymphocytes. i believe i have @ 16, and i'm at month 24; going into the extension phase. these aren't abnormal results. I will find out my levels of lymphs from labs drawn this we...
by k6ristin
Fri Feb 19, 2010 5:12 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Azygos anyone?
Replies: 20
Views: 5025

btw, i meant to say my doc read: as in: from the literature. i haven't had any scans yet; just wanted to clarify myself :)
by k6ristin
Fri Feb 19, 2010 2:53 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Negative False Creek MRV
Replies: 21
Views: 5831

Would you say False Creek is "good" at these scans? Are they following Zamboni's Protocol, setting their 3T MRA to his settings? I am trying to decide between Seton Imaging in Buffalo, or False Creek in BC. Also been in contact with a "new" place in Poland, and waiting for my doctor to get trained. ...
by k6ristin
Fri Feb 19, 2010 2:45 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Azygos anyone?
Replies: 20
Views: 5025

my doctor said from what he read, my stenosis is most likely in the azygous. my symptoms are mostly walking and my spine is riddles with lesions. (brain has quite a bit too)
by k6ristin
Fri Feb 19, 2010 2:42 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Who are the BIG names in CCSVI ?
Replies: 138
Views: 116189

Dr. Stanley Krolczyk, University South Florida, Tampa, FL has applied for a grant to study CCSVI and is supportive of the idea.
by k6ristin
Thu Jan 07, 2010 7:24 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Month 21-Two rounds of campath
Replies: 6
Views: 2520

24mg versus 12mg....i don't even think initially they told me the numbers, maybe in that million page consent form...and then the 6 changes they made to the consent to add things like thyroid, ITP, kidney function, etc... i just remember it was "to compare the high dose to the low dose.... and yes, ...
by k6ristin
Wed Jan 06, 2010 8:04 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Month 21-Two rounds of campath
Replies: 6
Views: 2520

month 22

officially dx'd a flare-up. asked if i could get campath early instead of steroids. dr agreed it would be a fantastic anti-inflammatory for me. genzyme says no, can't get it earlier...gotta wait for month 24. did learn that i did get 2 doses of campath @ each infusion (i had a feeling), versus the o...
by k6ristin
Wed Jan 06, 2010 7:49 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Fertility
Replies: 15
Views: 7101

fertility

of course. the response: no data on it yet. and the fierce reminder not to get pregnant. sounds scary! no data even on cancer patients. i did get word on the extension study--that i qualify and cannot get it sooner than month 24 (2 more months). having a flare up right now so i thought that might be...
by k6ristin
Tue Jan 05, 2010 8:05 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Fertility
Replies: 15
Views: 7101

fertility

so can you bug your doc to see what happened to her? did she keep the baby, is it ok, etc...
i also agreed and signed not to get pregnant, but still....
by k6ristin
Wed Dec 30, 2009 9:16 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Fertility
Replies: 15
Views: 7101

2 treatments. my study was to include extra blood draws that also looked at fertility in men. i opted out of the extra blood draws, but am anxiously awaiting publication of the results. month 24 ends the study, but the blood draws will continue. from what i understand there will be an extension and ...
by k6ristin
Tue Dec 29, 2009 1:52 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Fertility
Replies: 15
Views: 7101

Fertility

Anybody heard results on female fertility and campath? sorry if i've asked before. I'm not getting any younger! Thanks.
by k6ristin
Mon Dec 14, 2009 4:57 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Campath worked great for me for 6 months, then RELAPSE CITY
Replies: 23
Views: 6466

fampridine (and campath)

HI again, I used 4-AP off and on @ 1 yr ago; it seemed to work ok. (2x campath & worsening of symptons right after both, then 3mo short of 2nd annual infusion recurrance of new symptoms w/ lasting damage but no MRI negative change, in case you forgot :) 4ap is available through compounding pharmacy,...
by k6ristin
Fri Dec 04, 2009 8:14 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Month 21-Two rounds of campath
Replies: 6
Views: 2520

Well, really my results are encouraging by some standards. no real decline. some new issues popping up but they aren't debilitating so they don't "count" to anyone except me, who has to feel them! I think most of the good stories you hear about w/ campath come with time, where hopefully years pass w...
by k6ristin
Fri Dec 04, 2009 7:15 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Month 21-Two rounds of campath
Replies: 6
Views: 2520

Month 21-Two rounds of campath

Sorry guys, I've moved on to CCSVI !! I mean, that's where I've moved my proverbial eggs to. I think campath slowed down a wicked downward spiral but there's something out here that's keeping me down. Or I mean my wbc attack ON. whatever i don't know, but campath's not enough. i have to admit my die...
by k6ristin
Mon Nov 16, 2009 5:43 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Campath worked great for me for 6 months, then RELAPSE CITY
Replies: 23
Views: 6466

IGG, and worse after campath?

Hi Lisa, I tried IGg once, @ 3-4 months before I got into the campath study and was infused. it didnt help me but has helped others. to those in the post that have questions: we know we got rebif or campath, but in my version on cARE MS, you don't know what dose of Campath being infused. Now, the st...