Recently diagnosed with MDS with anemia and would like to connect

Posted by lindak123 @lindak123, Aug 4, 2025

I would like to share information with others. Thanks

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Profile picture for barbwsm @barbwsm

Why not Procreit?

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@barbwsm, Epoetin Alfa (Procrit) and Darbepoetin Alfa (Aranesp) are both medications given to patients with anemia in an effort to encourage production of red blood cell. Since the drugs are similar in their goals, doctors will make the decision based on what is best for their patient.

With the diagnosis of MDS your red blood cell counts have been decreasing. Your doctor prescribed Procrit in an effort to encourage red blood cell production. You mentioned in another reply that your RBC hasn’t returned normal. While the drugs Procrit or Aranesp may help promote red blood production it may not be enough to match the usual production of a healthy bone marrow. Every second, if healthy, the body will produce over several million cells. Over the course of a day, that’s over 200 billion red blood cells; A staggering amount. So if the ‘manufacturing equipment’ in the bone marrow is basically malfunctioning, the drugs can only do so much to keep up the pace. Think of it as a factory running with a skeleton crew. While there will be some production and the business will keep running, the output will be less than with a full production team.

When is your next set of labs?

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Profile picture for jeffreykassover1 @jeffreykassover1

@shoch1957 Hi, and hope things are improving for you. I am about to begin Reblozyl after trying almost everything else. How are you reacting to it?

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@jeffreykassover1 I’m not having g any negative reactions. It is bringing u my HG to between 10 - 11 from a low of 8.2

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Profile picture for suetex @suetex

Yes, I recieved Reblosal (sp?) two shots. Seem to fix things.

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@suetex One of the requiments was that I had'nt had a transfusion yet.

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Profile picture for shoch1957 @shoch1957

@jeffreykassover1 I’m not having g any negative reactions. It is bringing u my HG to between 10 - 11 from a low of 8.2

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@shoch1957 I hope I get to those levels, but so far, no success.

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Profile picture for shoch1957 @shoch1957

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

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I've decided to work with my diet. I can't seem to reach 12. Beans, spinach and clam chowder are on the top of my list. My appt is in a week. I'll report to you if it helps.

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Profile picture for Lori, Volunteer Mentor @loribmt

@barbwsm, Epoetin Alfa (Procrit) and Darbepoetin Alfa (Aranesp) are both medications given to patients with anemia in an effort to encourage production of red blood cell. Since the drugs are similar in their goals, doctors will make the decision based on what is best for their patient.

With the diagnosis of MDS your red blood cell counts have been decreasing. Your doctor prescribed Procrit in an effort to encourage red blood cell production. You mentioned in another reply that your RBC hasn’t returned normal. While the drugs Procrit or Aranesp may help promote red blood production it may not be enough to match the usual production of a healthy bone marrow. Every second, if healthy, the body will produce over several million cells. Over the course of a day, that’s over 200 billion red blood cells; A staggering amount. So if the ‘manufacturing equipment’ in the bone marrow is basically malfunctioning, the drugs can only do so much to keep up the pace. Think of it as a factory running with a skeleton crew. While there will be some production and the business will keep running, the output will be less than with a full production team.

When is your next set of labs?

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In 2 days. 01/14/26

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Profile picture for Lori, Volunteer Mentor @loribmt

@lindak123. That’s one of the preferred medications given for treating anemia. With your latest labs it certainly looks as though it’s working for you by raising your hemoglobin numbers. That’s very encouraging. Have you noticed any changes such as a little more energy?

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@loribmt The last few days I have been sleepy tired. I have been taking 3 hour naps. Prior to that I felt ok and my appetite has been better. I go Wednesday for labs to see how my hemoglobin is doing

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Profile picture for lindak123 @lindak123

@loribmt The last few days I have been sleepy tired. I have been taking 3 hour naps. Prior to that I felt ok and my appetite has been better. I go Wednesday for labs to see how my hemoglobin is doing

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I too go Wednesday for new numbers from my lab. Will see if eating spinach & beans are helping at all.

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Profile picture for lindak123 @lindak123

@loribmt The last few days I have been sleepy tired. I have been taking 3 hour naps. Prior to that I felt ok and my appetite has been better. I go Wednesday for labs to see how my hemoglobin is doing

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@lindak123 wishing both you and @barbwsm well with your labs tomorrow! I know it can be a little anxiety producing waiting for results but they are important for progress checks. I’ll be waiting to hear from you. ☺️

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Profile picture for Lori, Volunteer Mentor @loribmt

@lindak123 wishing both you and @barbwsm well with your labs tomorrow! I know it can be a little anxiety producing waiting for results but they are important for progress checks. I’ll be waiting to hear from you. ☺️

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@loribmt My hemoglobin was up to 10.7 so I did not have to have the injection.
I feel relieved .

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