← Return to Myelodysplastic Syndrome (MDS): how to increase red blood cells?

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@JustinMcClanahan

Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional, that Vidaza is a medication that is supposed to help red blood cells mature. If you don't mind sharing, has your provider discussed taking any other medications that are prescribed for MDS that are meant to stimulate growth of red blood cells [epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp)]? Here is a little more information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980. I'd like to invite @reibur1951 to this discussion as they have discussed MDS in-depth and may have some insight on the disease to share. You can also read some of rebur1951's posts here, https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/.

@jaylevel1, how are you feeling with this disease? Many people talk a bout experiencing fatigue, are you finding this to be true?

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Replies to "Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional,..."

A week ago I had to have a transfusion. 2 units. My red blood count fell to 7.2. A year ago I had another transfusion for much of the same reason. I had 2 different ports put in over 3 years cause they kept getting infected. Now I have none and recieve the Vidaza in the form of shots. In addition I get a shot of arnies (sp?). My red blood counts dropped real fast and a little over a year ago I had my 2nd bone marrow biopsi. Results came back negitive nothing abnormal. My hemotoligist said the results were great and continue with the shots. I believe he said It came back as less than 2 percent, whatever that means. Prior to a year ago I was doing great red blood cell counrs were 11 to 12.5. But a year ago I had a transfusion and they put it through my port and because it was still infected I went into septic shock and had to be rushed upstairs at the hospital where I was getting the transfusion. Thankfully I survived fully and within a week in the hospital I was fully recovered. I get my blood checked ever two weeks and although my numbers are not where I'd like my white blood cells, plattelets lymphnods are all great. I have high iron but thats because of the transfusion. I'm told it takes a long time for it to get back down.

Like u I been on vidaza an 50 mgs of the other drug for 14 days to lower my blast cells an now off for 2 weeks waiting to see if my counts go up I suffer low rbc hgb platelets an wbc an get transfusions on almost weekly basis with hgb goin fr 6.6 to 8.4 wat else should I be doing my oncologist is saying if my blast cells go real down she wants me to have BMT wat to do is my question tuff decisions