question to people on procrit/epo

[rexx73]

hello,

as maybee some still now in my week 12 of triple tx i had anemia problems and had an transfusion my hgb was at 7.4.
after the transfusion i became epo 30 000 twice a week,my hgb went up slowly to 10 and from last week to today
up to 12.
my doc now lowered my dose to 3000,i was not happy and worried became anemic again,but i have weekly labs done now till iam stable.

my doc says he want me put on dose were i stay stable.and we are doing weekly labs.

how did your doc handle the hgb epo/procrit thing?
did your doc once youre hgb has gone up also lowered the dose or took you off procrit?

i apreciate some answers from people that are on procrit.

regards marc

[rexx73]

the problem is that i took the shot yesterday already and my next would be sunday.

[can-do-man]

With an HGB of 12.9 Not taking the shot will not harm you...

[rexx73]

maybe i should ad that when i had 30 000 the name was recormon,now with 3000 its eprex
so i not have to convert the units?.

i not  have any of the symptoms above but iam worried.

now its easter and i will have my next chance to check before the planed 12 days next tuesday by my family doc.
or i check if my family doc opens saturday

but till saturday what can i do?

thats a scary thing.

[can-do-man]

One doctors treatment plan, thousand of other doctors not. Makes one wonder how one would chart this.

[nygirl7]

Really you should be getting a CBC done in a week, tops. What if it continues to climb, 12 days is a long time. I'd hate to be experiencing a stroke, blood clot or heart attack by the time I found out it was over 15 or something. Basically all the signs above. Which is what the black box warning us trying to avoid.

[Sentinel13]

Hi Marc: Follow your doctor's treatment plan. I know you've been struggling with anemia for awhile and I sense your doctor has a reasonable plan for managing it.

If I wasn't experiencing the warning symptoms listed on the Epogen web site (http://www.epogen.com/), extract pasted below, then I wouldn't be concerned.

"Call your healthcare provider or get medical help right away if you have symptoms of blood clots such as:
Chest pain
Trouble breathing or shortness of breath
Pain or swelling in your legs
Arm or leg feels cool or appears pale
Sudden confusion or trouble with speech
Sudden numbness or weakness in your face, arm, or leg
Sudden trouble seeing
Sudden dizziness or trouble with walking or balance
Loss of consciousness (fainting)
Your hemodialysis vascular access stops working."

Cheers, GB

[rexx73]

Iam feeling as always.feel the sides but there are no new symptoms.
I am worried about the danger but I also don't want to make own experiments with the meds.
my next lab work is in 12 days.

[nygirl7]

Seriously your hemo is almost 13 - when  is your next blood draw? I never heard anywhere that it had to be above 12 for weeks or months.......never.

[Sentinel13]

Hi Marc. Recommend following your doctor's advice.

Based on my experience, I suspect your hgb will start dropping. It appears your doctor feels it's appropriate to put you on a very low dose (3,000 units) possibly to moderate the drop in hgb.

While my doctor and I were adjusting my Epogen/Procrit, my hgb got as high as 13. The target/objective shouldn't be to keep hgb at 13 or above, however, I personally wouldn't be concerned with transitory spikes while the dosage is being adjusted.

How are you feeling? Are you experiencing any of the symptoms and side effects listed on the Epogen web site (http://www.epogen.com/) Cheers, GB

[rexx73]

@ debra,

did your hgb also gone over 12?I hope I will find a way to keep my hgb on stable level between 10 and 12.
I don't know if should stop the procrit or just do what my doc says.
I will maybe take this week just one instead of two shots and then go on with twice a week.
I hope the more riba and reduced epo will work and do decrease the hgb.
my doc knew well about the danger if stay above 12,but he said that you have to stay for weeks or months in this high range for to be dangerous.

[working dog]

you got to stop the procrit...no procrit over 12 is what i was told...i just don't see why anyone would take procrit if their hgb was above 10...my hgb stayed in the 8s amost all of tx...good luck....billy

[Debra100]

I also had the same anemia problems they lowered the Riba and started me on procrit every 7 days. Each month they would look at my bloodwork and adjust by my results.

[rexx73]

my doc says i should continue with the lowest dose of 3000 epo.
he said the hgb will go down as i take from today the full riba and 3000 instead of 30 000 before.
i really dont know what i have to do.

[willbb]

Hopfully your doctor is aware of the "procrit "dosing protocols.

http://www.rxlist.com/procrit-drug.htm

In clinical studies, patients experienced greater risks for death, serious cardiovascular events, and stroke when administered erythropoiesis-stimulating agents (ESAs) to target hemoglobin levels of 13 g/dL and above.
• Individualize dosing to achieve and maintain hemoglobin levels within the range of 10 to 12 g/dL.

[can-do-man]

Stop the procrit!!!

[rexx73]

today i had a hgb at 12.9.do i have to fear some complications?

last 2 weeks i had 30 000 epo as the the hgb raised to from 10 to 12 and now to 12.9.when it was 12 my doc lowered the dose from 30 000 to 3000.and told me to take full dose riba again.

so its still gone up to 12.9  but i had only one shot of the 3000 epo,and maybe it takes its time to go down again?

at the beginning of the week i started with the lower dose of 3000.
so do you specialists think my hgb should go slowly down as iam on full dose riba again and lowered epo from 30 000 to 3000.
i ask because i seen bills article where they say it could be  life-threatening to stay above 12.
i hope now my hgb goes a bit down with the lower dose.

[Sentinel13]

Hi Marc: I started Epogen/Procrit at 30,000 units, increased to 40,000, decreased to 30,000, stopped for a few weeks, and ended with 20,000. The objective was to keep my hemoglobin within a reasonable range. I have my Epogen tracking table posted as a photo on my personal page. If you look at my table, understand that my hemotologist and I were shooting for a relatively high hgb because my normal hgb is 17+ and I live at a high altitude where there is less oxygen in the air. Cheers, GB

[his3707]

my doc stopped procrit instead of reducing amount or increasing time inbetween shots.  I crashed and had to start all over.  

[crigger]

My DR stopped procrit when hbg got to 11

[rexx73]

@all,

thanks so much for your quick replies.

i just wondered why he cuts the procrit as was happy my hgb has gone up.

now i know it better.

thanks alot

[rexx73]

hi thanks,

for your posting it seems its o.k to reduce the epo.

ive seen  this topic
http://www.medhelp.org/posts/Hepatitis-C/procrit/show/1327535

some members say that at 12 they should cut or reduce procrit as it can make some problems when the hgb stays to high with procrit.

[spectda]

Your doctor is doing the right thing. HGB with procrit should not be above 12. usually they try to keep it in the 10-11 range. I spent most of a year with severe anemia taking procrit 40,000 units twice weekly. I was on triple with victrelis.
Good luck,
Dave

[nygirl7]

Your doctor did the correct thing, my doctor kept my hemo under 11 to be sure it didn't get too high. I was on epo for 69 weeks so it had to be carefully monitored.

[Bill1954]

Hi Marc,

I have no personal experience with epo. However, the drug was listed in a FDA black box warning in 2007, warning prescribers about adverse events:

http://www.medpagetoday.com/ProductAlert/Prescriptions/5231
~~~~~~~~~~~~
“...The FDA warned today that aggressive use of erythropoiesis-stimulating agents to raise hemoglobin to a target of 12 g/dL or higher was associated with "serious and life-threatening side-effects and/or death."

The agency ordered a black-box warning for the drugs that recommended the lowest possible dose to slowly raise the hemoglobin concentration to the lowest level that will avoid the need for a blood transfusion...”
~~~~~~~~~~~~
It appears your doctor is well informed. I believe it‘s routine to reduce epo dosage to maintenance levels once therapeutic results have been achieved.

Good luck,

--Bill