HBG

[merlino]

Hi All, Had anemia very bad. HGB dropped to 8.8  Started procrit did very well. Once I went up to 11 Dr stopped shot. Following week I went up to 12.6  Went for pcr this morning dropped back down to 10. They gave me the shot. I am concerned about dropping even lower till it kicks in again considering my history with anemia.

[friole]

Your doctor is doing the ridiculous.    You need to continue doing the procrit.  Don't stop.  If anything, if the hgb goes above 12, increase the number of days between the shots -- say from 7 to 10 -- but don't stop.  It takes too long for the body to regain benefit from the PRocrit each time.

If he insists on this type of treatment, ask for a referral to a hemotologist (blood specialist).
frijole

[jmjm530]

Heard that a lot here, and same happened to me on tx. Ended up going back on Procrit and actually required more (60,000 units/wk) the second time around. Remained on 60,000 units/wk until things went back up into the safety zone (took about six weeks) and then continued between 40,000 -- 60,000 units for rest of treatment. Based on my experience and others (including yours) my suggestion is that you speak to your doctor about continuing on with weekly Procrit injections even if it gets back up to 11. If he's concerned about your hgb going too high, then he can monitor your hgb weekly (or even more) which isn't a bad idea anyway until your hgb stabalizes. I felt best with my hgb in the 12's but settled for the 11's because I never could get it any higher once I stopped the first round of Procrit.

-- Jim

[merlino]

I am in his office every week for a pcr. This scared me. Is it normal to have that kind of drop after only being off the procrit for 2 weeks especially since I was at 12.6????? I worry over everything but the anemia was the worst thing I every went through,

[NYgirl]

Lord God why isn't he keeping you on it every week?  Considering he should know it takess 2 - 6 weeks for the Procrit to get into your bone marrow and produce the RBCs you need to RAISE the hemo level..............what does he intend for you to have six weeks of HELL followed by one or two good weeks and then six weeks of hell again?

WTF is wrong with him?

I am so sorry - you should be doing this shot at home at LEAST once a week and maybe twice a week if you have to. END OF STORY.

You call that SOB on the phone and get on his AZZ oh I'm so so upset right now!

By the time the Procrit works you could easily be at 8 again. I mean REALLY it's NOT an instant acting shot what is his problem!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[jordie47]

I am not sure how it works with procrit, but I am on aranesp and my hemo told me that if my hgb gets to 12 they can not give the shot because the insurance company considers that a safe range and will not pay for the shot.

[chcnme]

8.8 ?? !  Sheesh !  That's really low.  What in the world has he said he's going to do about it?  I can't imagine how awful you must feel, not to mention how worried you must be.  Isn't a HGB that low getting dangerously low?  I feel for you.  I hope you will report back that he has done something for you besides nothing and that he has assured you he's not going to let you drop like that and put you back on the procrit.  I don't think I could drag myself anywhere with a HGB that low.  Are you able to do anything?  gosh I feel for you and hope things get better.

[merlino]

Jeez Deb, I guess there is nothing easy about tx. Just when I thought the worst was over. I CANNOT afford to take any more time off. I am really worried about this Friday's shot. They want to see me next Monday.

[FlGuy]

I hope you don't end up in the depths again - it took a while for you to dig yourself out last time.  Everyone has good suggestions for you, but Jordie may be right on target.  Mine ins (your insurance company too - but could be diff policy rules) says it would approve procrit (at least for injection by hematoligist) only if below 12.  If that's the case, the trick seems to be timing and dosing to keep it somewhere in the 11-12 range.  Another balancing act for you at a tipsy time.

[FlGuy]

I don't know if I'd call this a suggestion or something to think about.  I think you are 1000 mg/day riba, sinking hgb, in week 13 and you weigh about 100 lbs soaking wet (maybe less with the hair issues).  If things get way out of hand anemia-wise and you absolutley cannot miss work, you can talk to the doc about dropping a riba until such time as tody's procrit begins to show some effect.  I'm really reluctant to bring this up, NYG and I are adamant - usually - about every shot, every pill, every day on schedule.  But sometimes you gotta do what needs to be done to get you through.  Run it by the doc if you get that anemia real sinking stuff.

[ladybug52]

NYGirl has all the info on how to get meds if the ins won't pay. Tell your dr just to write the prescription and I know Deb has posted prior on how to get free procrit. Everyone is right, you need to stay ahead of the hgb not try to play catch up!
Big

[merlino]

Hey friend. If there is one thing I won't do is lower my Riba. I would rather suffer with the anemia. I am too afraid what would happen. What if it affected my chances of SVR? I was on road yesterday and can really feel it today. My legs feel like they weigh a ton. I am hoping next Monday's procrit will kick in fast. Trying to stay tough but today I HATE Hep C, I hate tx and I hate hate all the sx we have to suffer through.Sorry, I know 13 weeks isn't very long but I am sick of being sick, and the brain fog is so bad. I past my exit on the way to my client yesterday and then did it again on the way home.

[FlGuy]

You've got the right attitude and the expereince of procrit stoppage.  Hope you and the docs can modulate the doses and frequencies to keep you in a 'constant safe zone', not only for the anemia but to play in the insurance guidelines.