Hi Deb,
You know we are all different and MDS is not one disease but many diseases that share some symptoms (= a syndrome).
Many patients with low neutrophils travel, go to big parties and so on and manage well. I am afraid of neutropenic fever and since I had that 2007 (after 3 infections) and I always live like I am neutropenic even when my WBC are OK just to be on the safe side.
Here is info about neutropenia
http://www.neutropenia.ca/about/livi...277b7622ac9394
I have been taking Neupogen (now the drug I am taking is called Zarzio) Sept 2007 to Nov 2011 mostly once or twice a week. Now I have started to take the drug again March 2013 when Thalidomide was increased to 50 mg 7 days/week instead of 50 mg 4 days/week.
I have never had any adverse effects except when I had to take the injections every day during 9 days to keep the neutrophils up when I started with Thalidomide 2010. Then I got pains in the knee joints. Neupogen does not increase blast cells as several studies have showed.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Supportive therapy until June 2010 when I started to take Thalidomide + Prednisone with positive effect until Feb 2013. Now trying Revlimid 5 mg/day 21 days in a 28 days cycle with Prednisone. Eventually positive response.