What is the danger in long term use of Filgrastim/Neupogen, Nivestym?

Hi @marco88. I read through your replies in a few other posts this morning to see where your husband is in his treatment for MDS with the 5q deletion. There are different subtypes of MDS requiring their own treatments. In your husband’s case, Revlimid appears to be the go-to plan of action. But it looks as though he is no longer able to take it, do to some kidney issues which developed.

With MDS, there’s ’trouble in paradise’ inside the bone marrow where blood products are produced. When the marrow isn’t able to turn out healthy, useable blood cells at a normal rate, the body is left wanting for red cells, white cells or platelets or all of the above. The side effects are often extreme fatigue, bruising from low platelets or susceptibility to illness with low white blood counts (neutropenia). Reduced platelets can cause easy bleeding and difficulty in clotting.

If your husband is no longer on current medication for treatment, it sounds like his hematologist is doing the best they can to keep your husband’s marrow producing red blood cells and white blood cells with Retacrit and Neupogen/Filgrastim injections that he’s receiving weekly. Without these meds his marrow is underproducing these vital cells.

These medications can be a doubled edged sword. Yes, there may be potential risks for long term use of these products, but in my understanding, the greater risk at this time would be to not receive these medications. The Retacrit is stimulating the development of red blood cells to help him avoid being transfusion dependent. And without Neupogen his white blood count may become dangerously low to where he no longer can fight infections.

As a side note, often for people who are taking Neupogen, it’s suggested to take Claritin antihistamine capsules for several days surrounding the injection. It helps with bone pain.

You mentioned your husband is also an easy bleeder. What is his platelet level?