Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?
Posted: Wed Jun 27, 2018 11:42 pm
Greetings all:
Had a genetic disease that caused kidney failure at age 42. (13 years ago.) Got a transplant, but with extra mass of the old kidneys and the new one, I've got enough Erythropoetin that I make too many Red Blood Cells (RBC)
Have had RLS and PLM on and off for somewhere between 5 and 8 years. A few years it got bad enough that I started seeking medical support. Got some, but now its not enough. Now my RLS its constant and worse. In order to get enough rest to be vertical, my waking days are now too short.
Originally tried Pramiprexol (sp?) and it was great. But after a few years I started having side affects and had to stop. Went through a couple more meds and ended up with NeuPro. That helps some, but not enough. went up to 2MG patches, but started having morning nausea side effects. Back to 1mg every night or two.
Tried oral iron with seeming no affect.
Got a series of 4 weekly IV iron (only 250mg ea) and it raised my iron (feratin?) from 18 to 75 and voila! My symptoms vanished!!! YAY!!! But within a month they were back as my iron went down again and now is steady at 25.
Unfortunately, my Oncologist was the one who did the IV iron and she is paranoid about raising my iron as she wants my high Hematocrit (currently 59.2) to be much lower. It was higher (60 - 62) for many years since my kidney transplant. She thinks IV iron will cause yet higher Hematocrit.
This latest RLS bout may be a result of starting Phlebotomies 2 years ago every 1/2/3/4 mo to reduce my Hematocrit. Probably why I ended up with the 18 iron reading above.
So, join, looked at the Iron and RLS webinar (fabulous!!) and starting to educate my doctors. Oncologist won't contact the 2 specialists listed in Denver (I'm 60 miles north of that - tried to contact for apts but one won't see me because I'm Medicaid and the other haven't gotten a real person yet) but wants me to see a Hematologist to find the line to keep my hematocrit acceptable.
So I'm caught in a catch 22 between too low iron and too high Hematocrit. Anyone else been here and anyone found anything useful?
As I have an engineering, science and systems background, I modeled this and my savior is the time lags and the slow rate of red blood cell production and limited decline of Iron. I'm guessing there is no static (constant) solution, but there is a dynamic one where I do both IV iron and Phlebotomies in an endless series. That is, figure out a schedule of IV Iron and Phelbotomies that keeps me at a high enough Iron level (and RLS free), yet removes some blood whenever my red blood cell count gets too high (which will pull more iron out of my system to replace the blood cells.)
I need to get this going as my life is not very functional. Doctors are **so slow**.....
-- S
Had a genetic disease that caused kidney failure at age 42. (13 years ago.) Got a transplant, but with extra mass of the old kidneys and the new one, I've got enough Erythropoetin that I make too many Red Blood Cells (RBC)
Have had RLS and PLM on and off for somewhere between 5 and 8 years. A few years it got bad enough that I started seeking medical support. Got some, but now its not enough. Now my RLS its constant and worse. In order to get enough rest to be vertical, my waking days are now too short.
Originally tried Pramiprexol (sp?) and it was great. But after a few years I started having side affects and had to stop. Went through a couple more meds and ended up with NeuPro. That helps some, but not enough. went up to 2MG patches, but started having morning nausea side effects. Back to 1mg every night or two.
Tried oral iron with seeming no affect.
Got a series of 4 weekly IV iron (only 250mg ea) and it raised my iron (feratin?) from 18 to 75 and voila! My symptoms vanished!!! YAY!!! But within a month they were back as my iron went down again and now is steady at 25.
Unfortunately, my Oncologist was the one who did the IV iron and she is paranoid about raising my iron as she wants my high Hematocrit (currently 59.2) to be much lower. It was higher (60 - 62) for many years since my kidney transplant. She thinks IV iron will cause yet higher Hematocrit.
This latest RLS bout may be a result of starting Phlebotomies 2 years ago every 1/2/3/4 mo to reduce my Hematocrit. Probably why I ended up with the 18 iron reading above.
So, join, looked at the Iron and RLS webinar (fabulous!!) and starting to educate my doctors. Oncologist won't contact the 2 specialists listed in Denver (I'm 60 miles north of that - tried to contact for apts but one won't see me because I'm Medicaid and the other haven't gotten a real person yet) but wants me to see a Hematologist to find the line to keep my hematocrit acceptable.
So I'm caught in a catch 22 between too low iron and too high Hematocrit. Anyone else been here and anyone found anything useful?
As I have an engineering, science and systems background, I modeled this and my savior is the time lags and the slow rate of red blood cell production and limited decline of Iron. I'm guessing there is no static (constant) solution, but there is a dynamic one where I do both IV iron and Phlebotomies in an endless series. That is, figure out a schedule of IV Iron and Phelbotomies that keeps me at a high enough Iron level (and RLS free), yet removes some blood whenever my red blood cell count gets too high (which will pull more iron out of my system to replace the blood cells.)
I need to get this going as my life is not very functional. Doctors are **so slow**.....
-- S