Procrit users

For those of you who had to resort to Procrit to get your hgb levels up, at what point did your hgb get to before you were either taken off or had a reduced dosage? The Procrit manufacturers state it should be monitored between 10-12. Mine is at 11.9 and I have blood draws every two weeks. My doctor is fine with my recent lab results, but I'm a little concerned since my hgb jumped to 11.9 fairly quickly when I started Procrit so two more shots before the next blood draw makes me wonder how far it will go up and what the risks of that may be. Any experiences? Thoughts?

[nygirl7]

I took Epo 40x2 a week and it put me over 12.  We backed down to 40,000 every five days and it kept me at a nice safe rate of 10.5 or so.  Sometimes you do have to play with it but you do not want it to be over 12 that is dangerous.  Since it does take a while to work you might be over 12 as soon as now......I would really talk to the doc about spreading it out or taking less.

[can-do-man]

Being a female and having a HGB of 11.9 not sure why the doctor don't want to back off the procrit, as nygirl said, talk with your doctor......... Best to you going forward.

cando

[spectda]

show your doctor the black box warning about procrit from the manufacturer.
http://www.procrit.com/sites/default/files/shared/OBI/PI/ProcritBooklet.pdf#page=1

As nygirl mentioned many people need adjustments to their dose and how often to take it.

Good luck,
Dave

[Junebug812]

I emailed my doctor again and told him what I read about Procrit on the manufacturer's site. He then wrote back later in the day and said we could do every other week. So thanks guys for the help and good advice.

June

[spectda]

Good job advocating for yourself. No one watches out for us the way we do for ourselves, that's why being educated about our condition is so important. It doesn't take a genius to learn about hcv and tx. It just takes some research and willingness to do some reading and interacting with other's who have been through the experience before us.

If your hgb gets to 10 or below perhaps you will need to make another adjustment, like every 10 days instead of once a week. You'll get it figured out, and it's good that your doctor was responsive to your concerns.

Did your doctor keep you at full dose ribavirin when your hgb started declining? Of course as you know the goal of the procrit is to stay at a safe hgb level and not dose reduce.

Good luck,
Dave

[uncledudeness]

way to go june...we have to be our own advocates.

after 4 procrit treatments, my HGB is at 9.3, from 11.4, prior to starting. but i really don't want to increase it, as i think it adds to my sides.

good luck and keep fighting.

[spectda]

I would think the sides from low hgb would be much worded then the sides from procrit. What kind of sides do you get from procrit?

How often and how much do you take? Does your doctor want you to increase. You don't want the hgb to start going in the 8s and 7s which can potentially require riba reductions and stopping treatment.

Procrit shouldn't be taken lightly but sometimes its the best choice. What treatment week are you in? Are you und?  I can't remember.

Dave.

[spectda]

I would think the sides from low hgb would be much worded then the sides from procrit.

Meant:
I would think the sides from low hgb would be much worse then the sides from procrit.

[uncledudeness]

i blame the procrit, but i don't really know if it's from the low HGB that is making me feel a bit worse. prior to taking procrit, i would bounce back by monday night, now it's tuesday/wednesday, and it all starts over again. when i say sides from procrit, i mean the sides in general from being on tx. from reading the literature, the possible sides are similar to SOC. however, one of the main sides from the procrit is constipation. i hope i have that under control now from using ducolax. it contains polyethelene glycol, the same ingredient as PEG in interferon. that's funny. i wonder if that stuff cleans windows too....or will get my whites whiter...hmmmm

i am in my 10th week of SOC tx, and have taken 5 shots of procrit (40,000 units), once a week. my riba dose is 1200, and that ain't changin.

i just got my 8 week labs back and the magic VL number for me is 299....yes 299. my eyes popped out when i read it....i am hoping i am UND as i type...

so that's my story and i'm stickin to it....i didn't do it, the check is in the mail....it's cuz of the brain fog...really

[spectda]

Good luck with your next vl result. My doc raised my procrit to 60,000 units per week (or about 40,000 every 4-5 days) after 3 weeks of procrit when my hgb did not go above 10. It still didn't get above 10 but I couldn't tx without it.

I find I get some mild side effects from procrit, but nothing compared to the anemia.

wishing the best for you.

Are you still riding during tx? I got to the point where I felt unsafe and I've been riding for years. Looking forward to getting back on the bike.

- Dave

[uncledudeness]

now that the 5' of snow are gone and i can see my driveway again, i think next week my babies are comin out of hibernation and i'll fire em up again. i reeeeeeeeeeally need to do something that reminds me of life before tx, and the motorcycles will do that. i'll take it slow and i promise to keep the front wheel on the ground.

good luck Dave

[Junebug812]

I too wonder about the Procrit, but am glad to have it because of how badly I felt before. Some of my sides have gotten worse since being on Procrit and I wondered if perhaps the sides weren't getting worse from SOC, but rather from introducing Procrit into my system. Either way, I will stay on the Procrit as I don't want to go back to feeling the way I did when my hgb went low. I just want my doctor to monitor it well because of the potential for serious sx.

Congrats on the low VL at 8 weeks uncledudeness! When do you get your next VL test?

June

[nygirl7]

I had no sides from Procrit, most of it was from treatment and having such a low hemo really.   Just try and think back to the head pounding ringing, not breathing, can't move two feet (I couldn't take my head off my pillow and fainted in the shower) and that made it seem really OK in the end.

Just like treatment Procrit too will come to an end for you.  Hang in there.

[Junebug812]

Haha, nygirl! I can so relate! I couldn't believe how hard the low hgb thing was. I've always been a "mind over matter" kind of girl....until that happened. Kicked my butt and made me humble.

@Uncledudeness, how on earth do you even have the energy to type with a hgb of 9.3?!