MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 6 posts - 1 through 6 (of 6 total)
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  • in reply to: Side Effects – Luspatercept/Reblozyl #65407
    Scott Davey
    Participant

    I have Luspatercept injections on a tri-weekly basis. I don’t have any side effects from them other than body aches once in a while. It’s worked well for me to keep my Hgb levels stable (at around 10.x) though I still have extreme fatigue and shortness of breath which goes up and down in severity.

    in reply to: Acupuncture for shortness of breath? #61732
    Scott Davey
    Participant

    I live in Sacramento and we have a Dr. Lee here who practices acupuncture. I went to her for back pain, after seeing a chiropractor, and she completely cured it in four sessions! She’s not cheap, though, $100 a session, so I’m thinking twice about seeing her for SOB. ChatGPT says that acupuncture can be effective for SOB in some cases, but it’s not infallible. I’ll report back if I go ahead with it.

    • This reply was modified 5 months, 3 weeks ago by Scott Davey.
    in reply to: Beginning aranesp treatment for low risk MDS #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!

    in reply to: HgB numbers high, feeling terrible #59337
    Scott Davey
    Participant

    Iron is high, but my doctor isn’t worried about it. Just looked it up and high Iron levels can cause fatigue and weakness. Thanks for the tip.

    in reply to: Beginning aranesp treatment for low risk MDS #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.

    in reply to: Can’t get oximeter readings #58610
    Scott Davey
    Participant

    Thanks for the tips, Karen. I wonder if they can turn the lights off around me next time?

Viewing 6 posts - 1 through 6 (of 6 total)

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