Low hemoglobin. In February 2013 I had to start transfusions again because my HGB was 8.8. The two first PRBC units were more than four weeks old and Rh- even though my blood is Rh+. After two weeks my HGB was down to 7.5! Tests did not show any reason for hemolysis but my blood was genotyped and since then I never get blood that is more than 13 days old.

We tried to increase the Thalidomide dose from 4 caps and 50mg/week to 7 caps/week. My platelets increased to 188 (very very high for me) but my HGB didn't increase. I had been responding to Thalidomide for 2.5 years compared to the median 9-10 months in several studies. I am thankful for that treatment.

Revlimid. I stopped taking Thalidomide in July 2013 and started to take Revlimid, 5mg/day three weeks out of four. I asked if I could take Prednisone too, although I knew it would increase the risk for deep vein thrombosis (DVT). I think Prednisone in combination with Thalidomide had increased the effect of that drug.

As far as I understood, DVT was more common in myeloma patients than in MDS patients. After two months, I got a DVT in my left leg. Since then I have to take a heparin shot (Innohep) every day to prevent DVT. Prednisone was tapered over three months.

In October 2013 my Revlimid dose was increased to 10mg/day, to try to produce a better effect. One month later my HGB had increased to 10.4 and I didn't need transfusions. My HGB continued to rise, up to max 14.5 by May 2014. I started to take Exjade 500mg/day to decrease my ferritin and my level dropped from 1900 to 1600.