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Month 24

Posted: Wed Mar 17, 2010 6:05 pm
by k6ristin
My study is Care MS 1. This is Month 24. entering into the extension phase and just learned I received the 25mg dose both times. My MRI showed no new changes. My blood is stable: lymphs are low but within normal parameters. I didn't ask @ the levels on the CD 54+ (or whatever..they test a few and i don't have that part memorized-if u rly want to know how low they go w/ campath, PM me :)

At the beginning of the study,I learned I have TPO antibodies, which means I'm at a higher risk of developing thyroid disease. with or without campath; so i signed an extra consent form that w/ campath i'm at a higher risk of developing thyroid issues.
A few times this year, my TSH levels were low. They were normal at other times, and the T3 and T4 are within normal limits. (My blood is drawn every month to watch for ITP; I'm not sure how often the thyroid is checked.) so it's noted but not technically a concern. no ITP

Symptomatically, I had one confirmed flare up this year, with new symptoms that hasn't gone away yet (3 months later)
My doc feels i was declining and post campath that decline has "slowed" down, and seemingly benefited from campath.
So I don't know when I'll take the third dose. I'm thinking about it, checking out some other stuff like allergies/diet; ccsvi, decreasing stress related to work, etc.
The question is when, not if; i should get it.

Posted: Thu Mar 18, 2010 12:20 am
by costumenastional
kristin, i have had a huge dose af campath myself about 10 months ago. even though i didn't relapse i am declining. i really dont know what would happen if i didn't do it but the way i see it, the risk is much more than the benefit.
i did it with high hopes but i dont believe it has worked for me. maybe the answer is somewhere else. ccsvi is something to look into because it makes sense to me, the way i feel and all...
if this doesnt work out i really dont know what i ll do. campath is not an option anyway.

good luck with whatever you do.