Anemia and dialysis. How i used EPO safely

[Anonymous35]

Hi guys, so I have been on dialysis since a month now due to a condition called FSGS. My kidneys failed in a year ..

Everything is fine for the moment, but not my hemoglobin.. it was at 15g/dl in june 2025. But now it’s at 8/9. It’s way to low for me i’m not feeling good at all always lethargic. That pissed me off because i would like to get a job but i can’t.

My nephrologist put me on 20ug on aranesp 4 weeks ago with iron IV but it didn’t get better
I have plan to buy some on the net because my doctor want to wait to increase the dose but i don’t want to wait anymore.

I’m also taking folic acid 5mg / vitamin b12 1000ug / 2 amp / week


I’m 24 yo feeling like i’m 80 lmao
So yeah, what kind of advice do you have for me especially with the ferritine to make sure it didn’t crash due to the EPO being too low

I just want to feel energized again

 

[Elektrobot]

Hi guys, so I have been on dialysis since a month now due to a condition called FSGS. My kidneys failed in a year ..

Everything is fine for the moment, but not my hemoglobin.. it was at 15g/dl in june 2025. But now it’s at 8/9. It’s way to low for me i’m not feeling good at all always lethargic. That pissed me off because i would like to get a job but i can’t.

My nephrologist put me on 20ug on aranesp 4 weeks ago with iron IV but it didn’t get better
I have plan to buy some on the net because my doctor want to wait to increase the dose but i don’t want to wait anymore.

I’m also taking folic acid 5mg / vitamin b12 1000ug / 2 amp / week


I’m 24 yo feeling like i’m 80 lmao
So yeah, what kind of advice do you have for me especially with the ferritine to make sure it didn’t crash due to the EPO being too low

I just want to feel energized again

Do you have thyroid panel results you can share?

 

[Anonymous35]

Do you have thyroid panel results you can share?

No, they don’t really cared about that in my center. I will ask tomorrow

 

[Elektrobot]

No, they don’t really cared about that in my center. I will ask tomorrow

If your Dr isn't running thyroid panels while you are experiencing this, you may want to look into ordering the tests yourself.

 

[Anonymous35]

If your Dr isn't running thyroid panels while you are experiencing this, you may want to look into ordering the tests yourself.

In France they are very annoying with this, due to the fact its « free » they always do the minimum
If i ask thyroid they will do only tsh …

 

[Elektrobot]

In France they are very annoying with this, due to the fact its « free » they always do the minimum
If i ask thyroid they will do only tsh …

That is frustrating.

Take some time to learn how thyroid can impact hemoglobin and ferritin, and directly ask for specific thyroid testing .

 

[Anonymous35]

That is frustrating.

Take some time to learn how thyroid can impact hemoglobin and ferritin, and directly ask for specific thyroid testing .

I ask this asshole of nephrologist, he refused

Only a blood test Tuesday about hemoglobin and iron
He also stop IV iron for today until tuesday bloodwork
I can’t stand those stupid doctor anymore

 

[Anonymous35]

Here is my last blood work Tuesday afternoon just before dialysis

 

[Bigoldguy]

How long have you been on the epo? It can take up to 6 weeks to see a noticeable increase in RBC count. Also, are you on a phosphate binder? Just curious as your phos is elevated. Also, are you making urine?

I run dialysis patients and, sadly, not having much energy is part of dialysis a lot of the time. You've been on dialysis for 6 months and Im guessing youre doing 3x week tx? 3 x a week your electrolytes and fluid levels are being adjusted in 3.5-4 hours...thats a quick shift. Eventually your body starts getting used to it but it can take quite a bit of time. Im guessing you feel pretty bad after dialysis, need a nap or rest when you get done, then the day after you feel a little better, then the third day youre feeling pretty pretty decent only to be going back to dialysis.

Im not trying to paint a grim picture but it takes time for everything to normalize. If your Hgb went from 8 to 10.5 then the epo is working.

Kidneys are super sensitive and changing things quickly can take a bad situation and make it worse quick.

Just an opinion so take it for what its worth.

 

[Anonymous35]

How long have you been on the epo? It can take up to 6 weeks to see a noticeable increase in RBC count. Also, are you on a phosphate binder? Just curious as your phos is elevated. Also, are you making urine?

I run dialysis patients and, sadly, not having much energy is part of dialysis a lot of the time. You've been on dialysis for 6 months and Im guessing youre doing 3x week tx? 3 x a week your electrolytes and fluid levels are being adjusted in 3.5-4 hours...thats a quick shift. Eventually your body starts getting used to it but it can take quite a bit of time. Im guessing you feel pretty bad after dialysis, need a nap or rest when you get done, then the day after you feel a little better, then the third day youre feeling pretty pretty decent only to be going back to dialysis.

Im not trying to paint a grim picture but it takes time for everything to normalize. If your Hgb went from 8 to 10.5 then the epo is working.

Kidneys are super sensitive and changing things quickly can take a bad situation and make it worse quick.

Just an opinion so take it for what its worth.

Its about 5/6 weeks since i started epo at 20mcg of arabesp and no i just started dialysis on 17th October

So i have dialysis 3 times/ week for 4 hours each time

I pee 3,5l of urine each day so for the moment no ultrafiltration
Yes i have sevelamer but i never take it, it taste horrible and i want to vomit

Yes i’m not feel great since i’m not on dialysis thats why i would like to increase my epo dose in the future to reach 14-16g of hemoglobin then i will feel perfectly fine to go back to work at full time
I live in paris here its fucking expensive to live.
Yeah i know its working but i just want to get back to feeling normal again, because sleeping 12h / day at 24 yo pissed me off to be honest