What disorders cause low red blood cells?

Posted by rbevill @rbevill, Mar 10 4:31pm

Does anyone else have a disorder where your body is killing off your red blood cells? My Drs can't find a reason but for over a yr and half now I have to get blood transfusions weekly or biweekly bc my red blood cells count get so low. I'm always tired and struggle with shortness of breath.

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Hi @rbevill. There are several blood conditions which can cause a decrease in red blood cells. This sounds very serious for you with having to receive blood transfusions so frequently. What type of testing has been done to help diagnosis what’s going on? Have you had a bone marrow biopsy?

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@rbevill,
What causes hemolytic anemia?
According to Johns Hopkins, https://www.hopkinsmedicine.org/health/conditions-and-diseases/hemolytic-anemia
There are 2 main types of hemolytic anemia: inherited and acquired. Different diseases, conditions, or factors can cause each type:
Autoimmune Disorders: The immune system produces antibodies that destroy red blood cells (e.g., Lupus, Rheumatoid Arthritis).
Infections: Certain viruses (HIV, Hepatitis, Epstein-Barr) or bacterial infections.
Medications: Some antibiotics or cancer drugs can trigger a reaction.

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I have what is called pancytopenia where all my blood counts are very low. I don’t have to get blood transfusions but they’re watched closely by doctors. My blood donating is long over. I believe my condition was caused by agent orange but the veteran administration will not admit it.

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @rbevill. There are several blood conditions which can cause a decrease in red blood cells. This sounds very serious for you with having to receive blood transfusions so frequently. What type of testing has been done to help diagnosis what’s going on? Have you had a bone marrow biopsy?

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@you are always so helpful to this website . Thank you !
My husband was on Vidaza , did well for 20 months and now the red blood counts are dropping .
Dr. ordered a BMB immediately to see what's going on .
The result ( came back a week ago ) was this BMB since 2 years ago has not changed and actually several mutations were not there anymore . Blast is still 5 % .
Dr was afraid Vidaza is not working anymore and is actually causing the low red blood counts since chemo can kill good cells too ; and my husband is not making fast enough red blood cells to replenish . He is 83 years old .
Current situation is to be on EPO injections only and no more chemo . Hope that works and give the patient a break .
If blood counts are low again , get blood transfusions .

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Profile picture for vng @vng

@you are always so helpful to this website . Thank you !
My husband was on Vidaza , did well for 20 months and now the red blood counts are dropping .
Dr. ordered a BMB immediately to see what's going on .
The result ( came back a week ago ) was this BMB since 2 years ago has not changed and actually several mutations were not there anymore . Blast is still 5 % .
Dr was afraid Vidaza is not working anymore and is actually causing the low red blood counts since chemo can kill good cells too ; and my husband is not making fast enough red blood cells to replenish . He is 83 years old .
Current situation is to be on EPO injections only and no more chemo . Hope that works and give the patient a break .
If blood counts are low again , get blood transfusions .

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Good morning, @vng I know what it’s like to plunge into the world of blood cancer without a hint of knowledge about what to expect. Pretty alarming and can certainly leave a person feeling lonely and uncertain. Having gone through what my mom would call “baptism by fire” I learned a heckuva a lot about blood, blood cancers and bone marrow transplantation over the years. I find it fascinating.
It’s important we all have a lifeline! That’s one reason I’m here, along with all the other awesome members, like you, to join in with sharing experiences. Together, we’re one big supportive family (without the drama of Thanksgiving dinners LOL )

Taking a break from chemo can be a good therapeutic period where the body is allowed to recover. The Vidaza looks like it was doing a great job keeping your husband’s MDS in check. I’m sure it was a relief for both of you and your husband’s doctor to see some improvements on that BMB from 2 years ago! If several of the mutations are no longer detectable that means those cancer cells are gone! That’s awesome!
But what’s not cool is the lack of red blood cells. Chemo generally kills quickly dividing cells. Unfortunately, they don’t discriminate and will take out other quickly dividing cells such as the blood cells. The marrow can also slow down or not be as efficient. So that break from chemo may help the marrow recover allowing it to generate more healthy blood cells again. The EPO injections encourage the body to produce red blood cells, which should help nudge up your husband’s red blood supply a little faster. If not, like you said, a having a transfusion is a great boost…both in cells and energy!

How has your husband been feeling? I’m sure with lower red counts he’s a bit fatigued. But otherwise, how is he doing?

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Profile picture for Lori, Volunteer Mentor @loribmt

Good morning, @vng I know what it’s like to plunge into the world of blood cancer without a hint of knowledge about what to expect. Pretty alarming and can certainly leave a person feeling lonely and uncertain. Having gone through what my mom would call “baptism by fire” I learned a heckuva a lot about blood, blood cancers and bone marrow transplantation over the years. I find it fascinating.
It’s important we all have a lifeline! That’s one reason I’m here, along with all the other awesome members, like you, to join in with sharing experiences. Together, we’re one big supportive family (without the drama of Thanksgiving dinners LOL )

Taking a break from chemo can be a good therapeutic period where the body is allowed to recover. The Vidaza looks like it was doing a great job keeping your husband’s MDS in check. I’m sure it was a relief for both of you and your husband’s doctor to see some improvements on that BMB from 2 years ago! If several of the mutations are no longer detectable that means those cancer cells are gone! That’s awesome!
But what’s not cool is the lack of red blood cells. Chemo generally kills quickly dividing cells. Unfortunately, they don’t discriminate and will take out other quickly dividing cells such as the blood cells. The marrow can also slow down or not be as efficient. So that break from chemo may help the marrow recover allowing it to generate more healthy blood cells again. The EPO injections encourage the body to produce red blood cells, which should help nudge up your husband’s red blood supply a little faster. If not, like you said, a having a transfusion is a great boost…both in cells and energy!

How has your husband been feeling? I’m sure with lower red counts he’s a bit fatigued. But otherwise, how is he doing?

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@loribmt You are very comforting ! Thank you for being here on line .
My husband is doing well at age 83 . MDS showed up at age 80 . His hematologist / oncologist always tells us he is very tough and healthy among his patients .
He has a good appetite all the time and learns to drink lots of water to lush out the chemo toxins from his kidneys ... he has been a very good patient .
He is tired and naps a lot . He drives his cars when he feels good ( like during his 4th week of chemo cycle ) . Now that he is not on chemo anymore, I am sure a lot of these chemo side effects should be gone soon .
After 20 cycles of Vidaza , he deserves a break .
May be that's God's way of helping him .
He has never been on EPO ( Aranesp injections ) ; but anything should be better than having chemo . So , this is a good change .
3 years ago , he started with Reblozyl . It only worked for about 6 months for him .
Then switched to Vidaza ....worked for 20 cycles .
Both of us are fighters and will do anything to get better if possible .
We also have great hope and faith from our creator above .
Like I said , nothing has changed with his latest BMB and that's comforting . We hope it will stay this way . A few of previous noted mutations are gone too and that's welcoming .
Dr did mentioned RYTELO but we feel the side effects are too harsh just to raise up the hemoglobin count .
Much rather just stay on EPO injections . Hope you agree .
It is good talking to you . May God bless you richly .

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @rbevill. There are several blood conditions which can cause a decrease in red blood cells. This sounds very serious for you with having to receive blood transfusions so frequently. What type of testing has been done to help diagnosis what’s going on? Have you had a bone marrow biopsy?

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@loribmt yes I have had 2 bone marrow biopsies and still no answers.

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Profile picture for harleewine @harleewine

I have what is called pancytopenia where all my blood counts are very low. I don’t have to get blood transfusions but they’re watched closely by doctors. My blood donating is long over. I believe my condition was caused by agent orange but the veteran administration will not admit it.

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@harleewine Appeal the decision to the administration — start with the Pentagon, not to the VA itself.

It took decades before the VA admitted that a unique type of cancer that appeared 30 years after exposure was caused by agent orange, but finally the VA admitted it and vets got treatment.

Read the military blogs. You are not alone. A relative of mine was treated by the VA for the rest of his life once the cancer’s cause was acknowledged.

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I understand the challenge of low red and white blood cell counts. Focusing on strengthening my immunity by drinks 2 cups of nettle tea infused fir 24 hours adding spirulina, morfina, and chlorella plus lemon juice and pomogrante and prickly pear juice everyday, no dairy, no meat, salmon, 2 cups dark leafy greens and 1 cup blueberries and coffee with 100% cocoa powder, soymilk and MCT oil, miso soup. White cell count went from 2.9 to 5.2. Will check m-spike numbers next week…..

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Profile picture for crunchywfwf @crunchywfwf

I understand the challenge of low red and white blood cell counts. Focusing on strengthening my immunity by drinks 2 cups of nettle tea infused fir 24 hours adding spirulina, morfina, and chlorella plus lemon juice and pomogrante and prickly pear juice everyday, no dairy, no meat, salmon, 2 cups dark leafy greens and 1 cup blueberries and coffee with 100% cocoa powder, soymilk and MCT oil, miso soup. White cell count went from 2.9 to 5.2. Will check m-spike numbers next week…..

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@crunchywfwf I have to take a lot of medicines because of various conditions from agent orange. I will confer with my GP and cancer doctor to see what they say. Thank you for the receipes. Hwine47

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