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Myelodysplastic Syndrome (MDS): how to increase red blood cells?
is there a natural alternative that has shown success in promoting more red blood cells. Currently I am receiving shots of Vidaza but not helping at all. I did better when I had a port but my body rejected it, so now I gt the shots in the back of my arm in the muscle. Strong dosed of vitamin b12 don't help either. With the port I was holding 11 12 easy in red blood cell counts. Normal range in males is 13 to 18. But anything over 10 is great. With the shots I can't break 9 and just had to have a transfusion when my blood counts dropped to 7.2 I don't have cancer but there is risk at that low of having it set in. I was just looking to see if anyone that has this have other suggestions to try. I've bought and tried Prohemia which promises increases of red blood cells but I've tried it for a couple of months with no improvement in counts.
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I have MDS with ring seidoblast I took Procrit for 4 years then went to Inqovi with poor results. Finally I went to MD Anderson Houston Texas to Dr Garcia Mareno. He told me that there were many strains of MDS and would need a nother biopsy of my bone marrow to determine for sure what would help me. After 15 days he started me on Luspatercept that was last December I have been transfusion free with a red blood cell count of 10 plus. MD Anderson was the only cancer institution that I had gone through that throughly went to diagnose what strain of MDS I have. I do not build adequate red blood cells. I feel pretty good still fatigued but I am still anemic at 10. But I am transfusion free with little or no side effects.
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4 ReactionsHi LindySue, individualized cancer treatments have come so far. What a relief that a bone biopsy was able to give your hematologist enough information specific to your MDS that you could be given effective treatment for you. Being transfusion free is no small thing.
How do you manage the anemia-induced fatigue? What are your tips?
I still suffer from fatigue but I push through with attitude. Do not want to give into my health issues. My biggest issue is joint pain and neuropathy . Do not like having to stay off my feet, they swell and a lot of joint pain in my knee. I keep trying to find someone that can help with these two issues. Have no idea if this is caused by Luspatercept or my poor red blood cell issue.
I have MDS and I went to Dr Mariano Garcia at MD Anderson in Houston. He made a diagnosis and put me on Luspatercept so far it is working. It is the type of MDS mutation that I have. I feel it is important to be diagnosed properly with the type of mutation you have. Has that been done? I also took a similar treatment to Vidaza with very bad effects prior to going to MD Anderson
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1 ReactionI accept the fatigue I am 72 and 20 lbs overweight. Need to work on that in hopes that would help the fatigue.
I use aranesp injections when I red blood count goes way low I also have mds-rs-sld and stage 4 lung cancer, you might also try beet juice it does help low red count and gives you a little energy.
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1 ReactionHi hope your doing better an yes I’m starting Inqovi soon an was wondering how yours an any other’s experience was with that drug
I am 43 years old and since I was 32 I started getting blood transfusions. I get them every week and now ten years later I have heart failure, pulmonary hypertension and my lower legs/ankle and feet are tight ,purple and leathery. The Hematoligist in ND, Mayo in Minn and AZ said I need a stem cell transplant because what I have is so rare. My red blood cells drop to 3,4,5 from 7 where I hang out at . I have to go in every week for blood. My WBC is 3. The Dr. in Mayo Minn thinks I won't live through the transplant but the ND and AZ Dr's think I should have it . Has anyone else had this disease etc.
Your numbers are like mine an I’m just starting treatment with Inqovi I’ll take 10 years an I like u was warned against stem cell but I’m gona get 2nd opinion
@teteryan1, making a treatment decision is especially challenging when your expert physician has differing opinions. Stem cell transplant is not an easy procedure. I think you may appreciate these 2 related discussions
- Bone marrow (stem cell) transplant support thread https://connect.mayoclinic.org/discussion/would-like-a-stem-cell-transplant-support-thread/
- My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Did you decide to go ahead with the stem cell transplant?