During the summer I slowly reduced my dose of Lyrica (pregabalin) to nothing, with no adverse effects, and life returned to normal quite easily.
On Wednesday I saw the consultant at my local hospital regarding the hemochromatosis. My ferritin level is currently 600, and a normal level is between 20 and 40, so there is some way to go. I will continue with the venesection every month until this level comes down. Apparently the ferritin level does plateau for a while and then drops significantly.
On Thursday I visited the BMT clinic for my regular checkup. We discussed my continued use of Imatinib (it seems a long time ago since I wrote about it, but this drug is normally stopped 2 years post transplant). There is very little evidence to support the use of Imatinib post transplant at all, let alone for two years. On the other hand, my BCR-ABL tests (for cell abnormalities) continue to show a weak positive, so we decided that I will continue with the Imatinib for the foreseeable future! There are two reasons to stop: one is cost (the UK government is paying for my medication), and the other is long term toxicity. Imatinib is used in the treatment of chronic myeloid leukaemia (CML), and people with CML have been taking it since 2000 (or earlier); there is a good article on the long term effects here if you are interested (probably not as much as I was).
My two clinics are now synchronised to the same week at 3 monthly intervals.
