1. < Blood Cancers & Disorders

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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Mentor
Lori, Volunteer Mentor | @loribmt | May 8, 2023
In reply to @kgerbitz "White count is ok. No other treatment so far." + (show)
@kgerbitz

White count is ok. No other treatment so far.

Jump to this post

I’m sure at your next appointment your doctor will be checking all your blood results again. Generally, when a patient’s hemoglobin is getting down into the low 7-8 range, a blood transfusion may be given. Your number at 7.7 is in that range but he may be waiting to see if your numbers do go up with this latest round of treatment before having you receive a transfusion.
If they don’t you may want to ask him about a blood transfusion and to check your platelet level. You’re anemic right now and that’s what is causing your exhaustion and being out of breath. A transfusion will bring you back to life…
Certainly if you feel very weak or lightheaded don’t wait until your next appointment. Call to get in sooner for some blood work.
And also, just for a little information, you’ll want to consider wearing mask if you’re in a public setting or a larger group of people. Your immune system is compromised so you’ll need to be extra cautious. I’m one of those people too…a masked miracle! 😉

REPLY
1 reply
kgerbitz | @kgerbitz | May 8, 2023
In reply to @loribmt "I’m sure at your next appointment your doctor will be checking all your blood results again...." + (show)
@loribmt

I’m sure at your next appointment your doctor will be checking all your blood results again. Generally, when a patient’s hemoglobin is getting down into the low 7-8 range, a blood transfusion may be given. Your number at 7.7 is in that range but he may be waiting to see if your numbers do go up with this latest round of treatment before having you receive a transfusion.
If they don’t you may want to ask him about a blood transfusion and to check your platelet level. You’re anemic right now and that’s what is causing your exhaustion and being out of breath. A transfusion will bring you back to life…
Certainly if you feel very weak or lightheaded don’t wait until your next appointment. Call to get in sooner for some blood work.
And also, just for a little information, you’ll want to consider wearing mask if you’re in a public setting or a larger group of people. Your immune system is compromised so you’ll need to be extra cautious. I’m one of those people too…a masked miracle! 😉

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Thank you ! You are my first contact with a person who knows.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | May 8, 2023
In reply to @kgerbitz "Thank you ! You are my first contact with a person who knows." + (show)
@kgerbitz

Thank you ! You are my first contact with a person who knows.

Jump to this post

I’m here anytime you need to need to talk, bounce ideas or a pep talk. 😉

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 8, 2023
In reply to @kgerbitz "My red blood count is decreasing despite shots. What’s next ?" + (show)
@kgerbitz

My red blood count is decreasing despite shots. What’s next ?

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@kgerbitz, I add my welcome. I moved your conversation with @loribmt about descreasing red blood cell counts and MDS to this existing discussion:

- Myelodysplastic Syndrome (MDS): how to increase red blood cells?: https://connect.mayoclinic.org/discussion/mds/

I did this so you can read previous helpful posts and widen your support circle with fellow MDS-ers like @jaylevel1 @littlelindysue @loula @tyson1221 @teteryan1 @shels93 @marcyjo and more.

REPLY
2 replies
tyson1221 | @tyson1221 | May 8, 2023
In reply to @colleenyoung "@kgerbitz, I add my welcome. I moved your conversation with @loribmt about descreasing red blood cell..." + (show)
@colleenyoung

@kgerbitz, I add my welcome. I moved your conversation with @loribmt about descreasing red blood cell counts and MDS to this existing discussion:

- Myelodysplastic Syndrome (MDS): how to increase red blood cells?: https://connect.mayoclinic.org/discussion/mds/

I did this so you can read previous helpful posts and widen your support circle with fellow MDS-ers like @jaylevel1 @littlelindysue @loula @tyson1221 @teteryan1 @shels93 @marcyjo and more.

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Thank you ya for some reason I’m havin trouble seeing replies or conversations

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1 reply
kgerbitz | @kgerbitz | May 8, 2023
In reply to @loribmt "Dropping 8.1 to 7.7 isn’t too drastic in itself, But having that low level of hemoglobin..." + (show)
@loribmt

Dropping 8.1 to 7.7 isn’t too drastic in itself, But having that low level of hemoglobin definitely has you feeling that fatigue and lack of oxygen throughout your body.
There’s not much you can do right now except listen to your body and take rests as needed. I can truly appreciate the frustration in having to be sidelined a little more when you’ve been very active all your life!

But seeing that you haven’t had consistent treatment since your first injections almost 5 months ago, it’s not a fair test. So you may be surprised when you start the medication again on a more consistent level. The red blood count may level out and start reversing. 😉

Just curious if you were spending the winter down south? When I required treatment my nurse coordinator at Mayo set up appointments for me in the infusion center of a hospital in the same city where we stayed in Florida. Would this be an option for you in the future?

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Yes we have a condo in fort myers. When I left my dr said if I started feeling bad to call and he’d figure out some thing. He thought I’d be ok till April since I had had no problem until a month before when the count dropped to 8,9. By the time I got a blood test in late March and found the number was 8.1 it was almost time to come home to my appt. I’m glad to know there’s way to manage while away from home. Without something like you mention, it’s a slow slog to get through the system in Fl.
Thank you!

REPLY
kgerbitz | @kgerbitz | May 8, 2023
In reply to @colleenyoung "@kgerbitz, I add my welcome. I moved your conversation with @loribmt about descreasing red blood cell..." + (show)
@colleenyoung

@kgerbitz, I add my welcome. I moved your conversation with @loribmt about descreasing red blood cell counts and MDS to this existing discussion:

- Myelodysplastic Syndrome (MDS): how to increase red blood cells?: https://connect.mayoclinic.org/discussion/mds/

I did this so you can read previous helpful posts and widen your support circle with fellow MDS-ers like @jaylevel1 @littlelindysue @loula @tyson1221 @teteryan1 @shels93 @marcyjo and more.

Jump to this post

Thank you !

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | May 8, 2023
In reply to @tyson1221 "Thank you ya for some reason I’m havin trouble seeing replies or conversations" + (show)
@tyson1221

Thank you ya for some reason I’m havin trouble seeing replies or conversations

Jump to this post

Hi Howard, are you not getting notifications for conversations you follow?
There are a couple of ways to do this. But I’m going to suggest one for now.
Click the grey-ish face/body icon next to your name. A little will window appear. At the bottom it will say, View Profile. Click there and it will take you to your personal information page.
You’ll see a little drop menu with:
Discussion
Comments
Reactions
Click on Comments and you’ll see a chronological order for all the comments you’ve made in different conversations.
It will take you to the support group where you can change your notifications.
I’m going to post a photo below which will show you what you need to look for under a conversation.
You’ll see a little bell. (I circled it in Red)
Click there and it will give you options for your notifications.

Select the option you’d like and viola! You should receive notifications again.

I was sorry to read that you’ve been in the hospital again waiting for your blood numbers to return to normal. Are you doing better now? Are you home?

REPLY
1 reply
tyson1221 | @tyson1221 | May 9, 2023
In reply to @loribmt "Hi Howard, are you not getting notifications for conversations you follow? There are a couple of..." + (show)
@loribmt

Hi Howard, are you not getting notifications for conversations you follow?
There are a couple of ways to do this. But I’m going to suggest one for now.
Click the grey-ish face/body icon next to your name. A little will window appear. At the bottom it will say, View Profile. Click there and it will take you to your personal information page.
You’ll see a little drop menu with:
Discussion
Comments
Reactions
Click on Comments and you’ll see a chronological order for all the comments you’ve made in different conversations.
It will take you to the support group where you can change your notifications.
I’m going to post a photo below which will show you what you need to look for under a conversation.
You’ll see a little bell. (I circled it in Red)
Click there and it will give you options for your notifications.

Select the option you’d like and viola! You should receive notifications again.

I was sorry to read that you’ve been in the hospital again waiting for your blood numbers to return to normal. Are you doing better now? Are you home?

Jump to this post

Thanks for gettin back yay I was neutropenic with fever an spent 17 days in hospital very sick but determined to survive a nite mare an just got home yesterday no more fever an counts holding for now

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | May 9, 2023
In reply to @tyson1221 "Thanks for gettin back yay I was neutropenic with fever an spent 17 days in hospital..." + (show)
@tyson1221

Thanks for gettin back yay I was neutropenic with fever an spent 17 days in hospital very sick but determined to survive a nite mare an just got home yesterday no more fever an counts holding for now

Jump to this post

Aw, Howard, you’ve been through the wringer with this! It’s a miserable feeling when you’re neutropenic and so weak. I’m happy to hear you’re back home but take it easy for a while. No basketball in the driveway. ☺️ Joking aside, it’s a relief to learn your numbers have stabilized for now. Hopefully you’ll see an increase soon. After 17 days in a hospital bed and their food, I’m sure if feels amazing to be back home again. I hope the sun is shining where you are today. Maybe a little fresh air outside for a while will help clear the cobwebs. You have a strong spirit of endurance, my friend. Sending you a hug.

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