Search found 76 matches

by k6ristin
Mon Aug 27, 2012 6:14 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: pseudo relapses after Campath
Replies: 8
Views: 6098

Re: pseudo relapses after Campath

I wonder what the lemtrada protocol will be for checking ITP. In the study, which I've been in 4 years now, it's a monthly blood draw. I'm over it ! Def check with your neuro @ pseudo relapses. At one point, discussion was that it be a 5year dosing, but I got 3, 3 years in a row, the last one being ...
by k6ristin
Wed Aug 22, 2012 3:31 pm
Forum: Introductions
Topic: Do I need ANOTHER LP??
Replies: 15
Views: 2188

Re: Do I need ANOTHER LP??

would you mind sharing the name/info on the MS-woman's issue doctor you mentioned in the pacific northwest? thanks!
by k6ristin
Mon Jun 18, 2012 9:59 pm
Forum: General Discussion
Topic: venoplasty and alemtuzumab
Replies: 9
Views: 1531

Re: venoplasty and alemtuzumab

Aspirin is fine w/ the campath. (81mg aspirin is sufficient for anti-coagulation) I've had 3 doses and have 2 stents. I dont know what the recommendations for lemtrada will be, but for the clinical trial, our blood is tested every month for ITP. I'm browsing the boards this evening looking for pregn...
by k6ristin
Mon May 23, 2011 3:33 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Who are the best CCSVI docs doing the procedure in the U.S.?
Replies: 34
Views: 6623

it sounds simple but this is what "they" say: when you enter the vein, it's response is to naturally close up. there's even a medical term "intimal hyperplasia" it just happens, not because of a doctor's skill level. there aren't good numbers, data, etc; because noone's doing a 'real' study on this ...
by k6ristin
Sun May 22, 2011 7:13 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: did round 2 in march and angiogram for ccsvi in april
Replies: 7
Views: 3489

It's been a year since this topic has been updated. Thought I'd say that since then, I did get treated for CCSVI (4x to be exact) and am now ready for another campath dose. Yes cam path made me feel pretty bad for up to 3 months afterwards but then it goes away and life goes back to "normal" The ste...
by k6ristin
Tue May 03, 2011 12:53 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Who are the best CCSVI docs doing the procedure in the U.S.?
Replies: 34
Views: 6623

Stay local! Dr. Montague @ St. Joseph's has treated me several times and is very good at follow up care. Best of luck
by k6ristin
Tue May 03, 2011 12:28 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Five year results
Replies: 10
Views: 3629

as for how I'm feeling, it's the usual MS story, some days good, some days bad. I can still walk, but not very far. I'm sure that if it were not for both Campath and 2 stents, I wouldn't be walking at all. The neuropathy that disappeared for about a year has returned. But it's summertime in Florida,...
by k6ristin
Tue May 03, 2011 12:03 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Five year results
Replies: 10
Views: 3629

Genzyme not checking spinal MRI

I'm headed in for round 3, part of phaseII CareMS study. it's been 2 years since my last infusion, they're (genzyme) letting me get another dose as part of the extension study. The news coming out from genzyme is very promising. I want to know the total # of people they are using to get these percen...
by k6ristin
Sun Nov 07, 2010 7:00 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Another one with ITP
Replies: 4
Views: 3573

Itp

Thanks so much for the update. I'm so sorry to hear, keep us posted! How are you now? I don't know @ Dr. Beer or fertility autoimmune issues. Are they campath, or ms related...or a thought on causes of miscarriage being that momma's immune system doesn't recognize baby? Thanks, Kristin. (2 high dose...
by k6ristin
Tue Oct 12, 2010 10:44 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Male fertility
Replies: 1
Views: 2823

I believe the care ms 2 study had an option for men to be checked. I have not heard any results from this from any trial participants. When I was fishing here for info on female fertility, no men offered up their results. Perhaps they opted out of this portion of the trial?
by k6ristin
Sat Jul 31, 2010 6:41 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Another alemtuzamab labrat
Replies: 84
Views: 19116

thyroid

I had positive TPO antibodies in the beginning (2008) and haven't had any thyroid issues.......yet :)
by k6ristin
Mon Jun 28, 2010 5:31 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Another alemtuzamab labrat
Replies: 84
Views: 19116

you're very welcome. I also find much comfort here.
Remember to take it with a grain of salt :)
Now share your story for us as it unfolds!

Does campath really cost $18,000 and/or did your insurance pay?

Thanks for commenting and I wish you all the best!
by k6ristin
Mon Jun 28, 2010 4:41 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Great news on Campath
Replies: 4
Views: 3460

I, too, got the high dose (25mg x2 doses) So far no serious tx related problems, but I know I am at a higher risk for thyroid since they screened for TPO antibodies, and i was positive, so I signed I knew I was at a higher rate for this. Also, I fear ITP! Haven't heard from fellow TIMS-Campath parti...
by k6ristin
Sat Jun 26, 2010 6:09 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Great news on Campath
Replies: 4
Views: 3460

it's been 2 years/2 infusions of campath. kept the disease from a rapid decline to a slower steady decline, therefore good per my docs. all written up on this forum :) i'm part of those "good" statistics that mendesnelson posted. see how it's a stock quote article, and didn't give the research just ...
by k6ristin
Sat Jun 26, 2010 7:31 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Great news on Campath
Replies: 4
Views: 3460

The stats have come out very good for Campath. Not much activity here on the campath forum! I hear that 1 treatment with campath costs $18,000! How long before it will be available to everyone? I couldn't stand to see 0 replies on your post. Thanks for keeping the forum up to date! ccsvi alone won't...