Birgitta Alexius' Personal Profile
Changes in Symptoms and Treatment (2010)
Increased fibrosis and decreased platelets. Everything was OK until May 2010 when my bone marrow got more fibrotic and I had to receive blood transfusions every week. My dysfunctional platelets decreased to 22 and I was afraid of getting a brain bleeding. My ferritin value increased from 1400 to 5600. My doctor thought that I ought to try some drug and persuaded me to try the immune modulating drug Thalidomide together with Prednisone.
Thalidomide and Prednisone. Most patients take 50 mg Thalidomide/day but that dose decreased my WBCs so I take only 50 mg 4 times a week. I have had no other adverse reactions. I started to take 20 mg Prednisone/day - I didn't want to take the ordinary dose of 30 mg/day because I was afraid I'd have sleep problems. The Prednisone was tapered to 5 mg/day and I asked my doctor if I could continue with that dose. I have severe osteosclerosis (hard bones) so there is no risk for osteoporosis.
After 4 weeks with Thalidomide my platelets were 43 instead of 22. After 7 months they reached 80 (they were 65 at diagnosis). My HGB started to increase after 3 months. By September 2010 I was no longer transfusion dependent. I had been transfusion dependent since dx 2006 so this was a very positive change for me. We don't know how long I will be responding to Thalidomide but my HGB is still increasing very slowly so I hope that the response will last a long time.
As of January 2011 I was taking Thalidomide 50 mg 4 days/week, Prednisone 5 mg/day, 2 Neupogen injections/week and Exjade 500 mg/day.
Off Exjade and Neupogen. By July 2011 I was able to stop taking Exjade since my ferritin level was less than 1000. In November 2011 my Neupogen was stopped because my WBC was within the reference range.
In September 2011 my HGB reached 13.7, after 15 months with Thalidomide and Prednisone. Then it slowly decreased.