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

Posted by jaylevel1 @jaylevel1, Nov 16, 2018

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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My friend has MDS in the late stages . He is receiving 4-6 units of blood /week. Nothing has helped so far and he has been turned down for a bone marrow transplant . I was hoping you might pray for him. Ranney.

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@donnajones

My friend has MDS in the late stages . He is receiving 4-6 units of blood /week. Nothing has helped so far and he has been turned down for a bone marrow transplant . I was hoping you might pray for him. Ranney.

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I’m so sorry to hear about your friend and the seriousness of his late stage MDS. Sadly, this disease can progress to a more aggressive form of leukemia which may be difficult to treat. A bone marrow transplant remains the only potential cure for MDS or AML. But unfortunately, a transplant may not be suitable for every individual with MDS because of the rigors of the pre-transplant chemo, medications and the transplant itself. This can be due to the age of an individual or more often it’s due to co-morbidities which may cause complications for the patient.
This is a very sad and difficult time for your friend and his loved ones. Sometimes all the modern medicine in the world can’t change the course of a disease. Blood cancers can be formidable foes. I’ll certainly add him to my prayers and hope that he will remain comfortable and at peace.
Is he currently in a hospital or involved in hospice?

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@donnajones

My friend has MDS in the late stages . He is receiving 4-6 units of blood /week. Nothing has helped so far and he has been turned down for a bone marrow transplant . I was hoping you might pray for him. Ranney.

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I am receiving injections of Luspatercept every 3 weeks. This has gotten my hgb over 10 consistently. Maybe ask if he is a candidate for that drug.

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@loribmt

I’m so sorry to hear about your friend and the seriousness of his late stage MDS. Sadly, this disease can progress to a more aggressive form of leukemia which may be difficult to treat. A bone marrow transplant remains the only potential cure for MDS or AML. But unfortunately, a transplant may not be suitable for every individual with MDS because of the rigors of the pre-transplant chemo, medications and the transplant itself. This can be due to the age of an individual or more often it’s due to co-morbidities which may cause complications for the patient.
This is a very sad and difficult time for your friend and his loved ones. Sometimes all the modern medicine in the world can’t change the course of a disease. Blood cancers can be formidable foes. I’ll certainly add him to my prayers and hope that he will remain comfortable and at peace.
Is he currently in a hospital or involved in hospice?

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Neither until 8/9/24 he decided to go with hospice. I transfused him Thursday and his Hgb was 2.9. He doesn’t know how not to fight. They r now like my family. Thank you for the prayers for him, I pray for a peaceful comfortable time for him as well❤️

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@pattikp

I am receiving injections of Luspatercept every 3 weeks. This has gotten my hgb over 10 consistently. Maybe ask if he is a candidate for that drug.

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Thursday his Hgb was 2.9 and he got 3 units but it only last about 2 days. He decided yesterday to go with hospice. I will keep you in my prayers if that is okay.

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@pathilt

It's not a new oncologist. Just moved her appointment up a month. They mentioned starting her on Luspatercept next week so we'll see.

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Hi @pathilt, I just wanted to check in to see how your sister has been feeling. She started a new med for her MDS related anemia a few weeks ago. Has she seen any improvement? Any updates from her hematologist oncologist?

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Hi Lori:
I just got out of the hospital. I came down with COVID and it wasn’t so bad but around day 8 I started getting pain in my chest and back. Not a stabbing pain but like muscle pain. As you know I have CMML and tske hydroxy. After several tests done (blood test an ultrasound a chest X-ray COVID test on an iv and heart monitor and later that night a scan. It came back I have pericardial effusion ( water around the heart and inflammation). My red count were 108 white count 20 and platelets 78 they didn’t give me a blood transfusion he said I have been 108 before. So they are putting me in naproxen and colchicine. They told me to check with my pharmacist to make sure it doesn’t interact with
My other meds i. e. hydroxy. The COVID messed up all my counts.

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@jacklyn

Hi Lori:
I just got out of the hospital. I came down with COVID and it wasn’t so bad but around day 8 I started getting pain in my chest and back. Not a stabbing pain but like muscle pain. As you know I have CMML and tske hydroxy. After several tests done (blood test an ultrasound a chest X-ray COVID test on an iv and heart monitor and later that night a scan. It came back I have pericardial effusion ( water around the heart and inflammation). My red count were 108 white count 20 and platelets 78 they didn’t give me a blood transfusion he said I have been 108 before. So they are putting me in naproxen and colchicine. They told me to check with my pharmacist to make sure it doesn’t interact with
My other meds i. e. hydroxy. The COVID messed up all my counts.

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Hi Jacklyn!
Well, you’re sure having some unexpected medical drama with Covid and the pericarditis. I’m sorry to hear that because I know you’ve been having a pretty good summer up to this point. It’s a good thing you followed your instinct of having the chest and back pain investigated. That had to be a little scary! My niece had a similar experience a few years ago after having the flu. Her clinic thought it was a blood clot at first and then discovered the pericarditis. The meds worked really well to reduce the inflammation and it didn’t take long for her to bounce back to full speed. Hopefully you’ll feel much better and return to normal soon!

Covid or really any illness/infection can mess up our blood counts. It’s all part of the immune system response to bacteria, viruses, fungi… For most people, whose blood isn’t checked as frequently as those of us who have a blood condition, don’t even realize how much their blood numbers fluctuate during and after an illness. Once the event is over, within days or weeks the numbers generally return to normal. So hang in there! Just give yourself some time to rest and heal.
What were your worst symptoms of covid? Did you have the high fever and lingering cough?

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@loribmt

Hi Jacklyn!
Well, you’re sure having some unexpected medical drama with Covid and the pericarditis. I’m sorry to hear that because I know you’ve been having a pretty good summer up to this point. It’s a good thing you followed your instinct of having the chest and back pain investigated. That had to be a little scary! My niece had a similar experience a few years ago after having the flu. Her clinic thought it was a blood clot at first and then discovered the pericarditis. The meds worked really well to reduce the inflammation and it didn’t take long for her to bounce back to full speed. Hopefully you’ll feel much better and return to normal soon!

Covid or really any illness/infection can mess up our blood counts. It’s all part of the immune system response to bacteria, viruses, fungi… For most people, whose blood isn’t checked as frequently as those of us who have a blood condition, don’t even realize how much their blood numbers fluctuate during and after an illness. Once the event is over, within days or weeks the numbers generally return to normal. So hang in there! Just give yourself some time to rest and heal.
What were your worst symptoms of covid? Did you have the high fever and lingering cough?

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Hi Lori:
No I didn’t have any fever a loose cough and really I the beginning didn’t feel that bad at all. It was just on day 8 I got the chest pain and while in the hospital the next day it subsided. Now I don’t have don’t pain but I
Better take the meds just in case.
In fact the COVID test they repeated in the hospital the doctor told me it was a really faded light red lune for COVID.

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My prayers go out to the people who are struggling with MDS. May God bring you peace.

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