Taking Procrit from Day 1 of treatment

[Laika]

Hi all...I am 2 mos. post treatment, feeling good.  My husband will start treatment soon, so I am about to ride the roller coaster in a different seat. I am worried about my husband

[GoofyDad]

Just an update on our procrit discussion, and whether I should start. I went ahead and shot it last nite. I'll see  what weekly labs say, and if hgb is holding (procrit shouldn't take affect by then) I'll lobby to skip a week. If hgb continues down, I expect I'll be happy to have the procrit in the funace and I'll keep plugging away.

Thanks for your advice everyone.

[SnoWav]

Hi,my wife did the 48wks and her count went way low, procret was not the trendy thing at that time so she did without and did fine. I am at 36 weeks 52yr old 182 lbs working 40 hr weeks have been taking a little extra interferon 190 and was taking 1400 riba but cut back on the riba just to have more fun. Anyway my counts are just below normal the sides are controled with a little tylnol.
I guess Im saying some people don't need extra stuff to get thru TX. The reward is in the journey. cheers

[Laika]

Thank you all for your thoughts.

I "only" did the 6 months of treatment, and at 2 months post, feel more or less like I did before.  I still awaken every morning with my head aching from congestion, but it goes away once I'm up.  My skin has returned to normal; the itching and acute dryness is over.  My hair is still falling out, but I think it's slowing down.  I had maybe 3 inches cut off so it would look better.  I'm getting used to medium length hair--not so bad.  When my hair grows back, I might decide to keep it this length.  The most important thing is that my energy level is back.  It came back pretty quickly.

Califia, you did such a long stretch.  Are you feeling pretty good by now?  I've been taking a break from the forum, knowing I'd be back here when my husband began treatment and I started in with worrying!  So...back awhile, I read that you were very pleased to be able to think again--so true!  I forgot to mention the return of that valuable function.  Wonderful to get it back.

Wasabi Pea, this business with the iron pills is new to me.  I've always read not to take supplements with iron, and the problems associated with iron overload.  ??  Always more things to consider.

Marc Botts--I never took procrit.  My hgb never got below 11.5, but it was very difficult to function.  The last couple of months, I had to take lengthy naps in order to get through the day; normally, I am not a nap taker.  My work allows for some flexibility, so I was able to grab some time to lie down here and there.  If I had been working in an office, part time is the most I could have managed.  The energy drain was the worst part of treatment for me.

Again, thanks to all for your posts.  May your treatment be manageable and SVR be yours.

Laika

[Califia]

First of all, congratulations on your return to life.  It's heartening to hear you're doing so well.   As for the Procrit, I would tread lightly and leave this decision up to a trained medical professional.    I do know that if your husband were to be given epoetin--whether as prophylaxis or during tx-- he would probably need extra monitoring, as it can cause hypertension.  Looks like you have a date with Medline!   Take good care, both of you.

[NYgirl]

The weather up here in NY is a mess so they are trying to blame it being "delayed" on the weather & the Jewish holiday (what difference can that make???)

Now they say tomorrow morning. I told them I just want them to show me how to do it the first time because after that I will be doing it myself.  Odd for a girl who used to be so scared of needles - but I am sick of being at THEIR beck and call on THEIR schedules and having to BEG for attention!

I just can't imainge if it gets any lower and I end up in the ER or the hospital again being transfused.  Four transfusions last year and that is ENOUGH for me. I dont need any OTHER complications!

It's just a big giant horrendous game the insurance company pays.  Turns out now as of this morning they approved me for 75 weeks.  Earlier today they were complainning about ten weeks.

Figure that out?

[jmjm530]

Tomorrow morning should do. The insurance game is a PITA but at least they paid. Some instructions for injecting Procrit in the "Joint" thread, below. Meanwhile, take it easy (not that you have a choice) when your Hgb level is low.

-- Jim

[jmjm530]

Don't know how long you have to wait, but I would imagine most hospitals stock Procrit -- so maybe your doctor can send you (or get it) from whatever hospital he's affiliated with. Fortunatly, my doctor's office is in a hospital and when they gave me a rx and did the "turn and leave"  I told the NP I needed the shot right away or I'd end up back in the ER. She saw I wasn't leaving. :) So she searched around for about ten minutes, found a vial, and gave me a shot on the spot. Anything to get me out of the office. :) Good luck.

-- Jim

[NYgirl]

I sure wish I had.

After battling the ins. co. for the past two days they finally approved 10tx at a cost of $6,000.  Now nobody carries it in the store cause of the cost so I am waiting here.  I was a 14.2 then 11 days later a 9...and now it's another four days later and I wonder if I'm an 8.  By the time it kicks in what would I be like a 4? Transfused?

If they would do it proactively it would be marvelous - but at the cost of the med they are just never going to be so kind to us.

I guess we have to be second class citizens in this insurance world cause it's all about MONEY and not getting us well.

If I end up in the hospital - they are going to have to pay the cost of the Procrit and the hospitalization - so they really are foolish aren't they?

[GoofyDad]

Thanks for posting the instructions. My procrit's in the fridge. I'm not feeling I need it just now, but we'll see what the labs say. Anyway, I'll be printing your detailed intructions, better than I got from the mail order pharm. What a trip this is. Who would'a thunk it?

[jmjm530]

I'll just add that for some reason the Procrit doesn't sting when I inject it right out of the fridge. I've heard many people post the opposite.

Anyway, I went back to injecting it warm (half hour out of fridge) yesterday since my Hgb has gone done when I injected it cold. I'm sure there's no relationship to temperature and efficacy but who knows. So maybe the "sting" is good.:)

Forgot your Hgb level but as you know it takes 2-4 weeks to kick in. I'm waiting right now.

-- Jim

[Wasabi Pea]

Hey Laika,

I'm actually on round 2 of tx.  Last year they initiated my first round without procrit.  They tried to intervene around month 3, but it already had dropped too low so they discont'd tx.

This time, my new doctor tried to pump up my hgb with iron pills prior to treatment.  When that didn't seem to affect my baseline (which is 11.3...I'm a 32 y.o. female), he decided to treat me with procrit PRIOR to starting tx.

I took procrit for maybe a month, month and a half before tx.  It got me up to 13.3 (I have never felt that energetic in my life...should have seen me weeding the yard!), which gave me wiggle room for when it invariably went down with the riba.

Unfortunately, the anemia is a constant struggle for me, so now, after 8-9 months of tx (can you believe I've lost count?), I've had my procrit increased three times and my riba lowered dramatically.  I'm hanging on at 9.3, which is way better than 7.6.  Not sure how this will pan out though.

One thing to ask your husband's doctor, though, is about iron intake.  Although iron is generally avoided during tx, I'm required to take two iron pills a day.  Apparently, you have to have a certain level of iron in your system in order for the procrit to work its magic.

Hope that helps.  And congrats on completing tx!  How are you feeling?

[genotype]

I am writing an article for Hepatitis magazine on the topic of anemia some HCV patients experience while on the combo treatment. In had a successful trial with the interferon/ribavirin protocol, before the Peg/riba, and did not suffer this problem. I would definately be interested in talking/corresponding with any of you who experienced anemia. You can e-mail me at marc.***@****. I would be more than happy to call you or send you some questions. Thanks in advance.

Marc Botts

[kespr]

I was told by the Mayo Clinic to start procrit before tx but insurance would not accept it so I didn't take it untill bt was low enough

[GoofyDad]

Insurance is of course, another concern.

[jmjm530]

What is his hemoglobin level now? Unless it's on the high side, I think taking Procrit prophylactively is a very smart idea, but like you say, most docs don't do it. On the other hand, I have read about it and and I'd definitely bring it up with yours. You might also want to research it out a bit if you feel you need written ammo for your doctor, especially in light of your husband's age and heart condition.   If you go this route, probably should be taken about 2-4 weeks prior to therapy so it starts kicking in about the same time the riba does.

-- Jim