How long should one be continuing on tacrolimus ???

[susansr]

Hi. I havent been to the site for awhile. Sorry. Just wondering since I am 2 and a half years out of treatment for AA, havent had a transfusion in 10 months, doing pretty good. Doc is still keeping me on 8mg/day of tacrolimus.
I know drug maintenance is important within the first year, but anyone know if its still necessary at this point?
Anyone have similar issues?
Regards,
Susansr

[MelanieW]

Hi Susan
Wow I have been wondering the same thing. I am exactly 6 months post ATG (to the day! - March 6). My last counts 1 week ago were:
WBC 5.3
PLT 43,000
HGB 9.7
As you can see, these are good counts and dr. says I am having a "partial response". Last transfusions were in April 2012.
I take tacrolimus 10 mg per day + acyclovir + mepron (the last 2 prophylactically). A lot of the articles in the journals say to start tapering at 6 months. Last time I asked, he told me "indefinitely" for the tacro.
Now here is the big question: I see you are from Boston, I go to Dana Farber for my treatment. Wouldn't it be funny if we had the same doctor?

[susansr]

Dear MelanieW:
Thanks for responding. It seems like your numbers are rising nicely just being 6 months post ATG. It appears that tapering is done more after 1 year post ATG, and that people who were tapered earlier were more likely to have a relapse.
I sent you an email about my doc at DFCI. Interesting if we have the same doc. I don't know anyone else from DFCI!

So, for you, probably staying on course with the drug regime is better right now. For me, who knows? Two and a half years........
susansr