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Beginning aranesp treatment for low risk MDS

Home Demo forums Patient Message Board Beginning aranesp treatment for low risk MDS

Viewing 10 posts - 1 through 10 (of 10 total)
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  • #59263
    Joe Catalano
    Participant

    Diagnosed one and a half years ago. Was on watch and wait. Just now started aranesp- on it for six weeks. Red blood cells, and hemoglobin have risen slightly. Still mostly tired- Has anyone recently began aranesp ? How is it working for you? Thank you.

    • This topic was modified 1 year, 4 months ago by Joe Catalano.
    #59305
    Marie Yeager
    Participant

    Hi Joe,
    My husband is also low-risk and started Aranesp 18 months ago. It took a good 4-6 months for it to really begin to work. We were very anxious looking for an immediate response with every blood test, but they warned us that it would take a while to start feeling better… and the doctor was right. Give it more time. It is very difficult to be patient when you aren’t feeling well, but it did eventually pay off! Hang in there!
    Marie

    #59324
    Joe Catalano
    Participant

    Thank you for your reply Maggie. It was very encouraging. And yes I will be patient. I had read for six weeks, so I was expecting that, but it’s good to know that it will eventually kick in. Once again, thank you and best of luck to you and your husband. Good health.

    #59334
    Scott Davey
    Participant

    I’m taking Aranesp, but also Granix to keep white blood cells up and Luspatercept, which does an excellent job keeping HgB numbers steady. None of these seem to affect my symptoms (shortness of breath) though.

    #59341
    Joe Catalano
    Participant

    I know, I replied to your comment, and thank you. It was uplifting. A question that has a reason is, did they have to increase the dosage for it to do its work. My numbers have gone up a bit and slowly and my doctor and I have discussed the possibility of increasing dosage

    #59342
    Scott Davey
    Participant

    No, I’m still on the same dosages they started me on. The only one I have the dosage on is the Neupogen: filgrastim 480mcg/1.6mL Soln
    Commonly known as: Neupogen. Good luck!

    #61832
    lisab
    Participant

    My husband’s hemoglobin dropped due to kidney failure. They gave him aranesp. It took about 6 months for it to kick in. He is now at a good level for transplant.
    On the positive side of things it gave him a taste of what my life is like with MDS.

    #63282
    Joe Catalano
    Participant

    Thank you all for your replies just an update here I begin increased dosage from 300 to 500 units of our nurse two weeks ago.
    So far, my red blood cells and hemoglobin are remaining about the same; no increase in either. Don’t know if that’s important to anybody but if you’ve got something to add, please let me know. Thank you.

    #63284
    Darwin Thomas
    Participant

    hi

    #63302
    Marie Yeager
    Participant

    Hey Joe,
    I hope you are seeing improvements! They started my husband on 500mg to start, so it seems your doc is taking a conservative approach to see how your body responds. You don’t want to ramp up to top unless you really need it. How often do you get your injections? My husband started out every three weeks and is now getting them every two weeks (for about the last 9 months). His hemoglobin was surprisingly high this last time, so thinking they might move him back to every 3 weeks. You should start seeing improvements over the coming weeks. (In energy too!)
    Hope you are doing well,
    Marie

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