HGB/Procrit

Hello my friends. Hope everyone is doing as well as we can. I could use a little help. My hemo is giving me weekly Procrit shots. The first round my HGB dropped to 8.8 and after procrit shot up to 12.6. Once I hit this Insurance said no more Procrit. So I dropped back down to 9.2. I was put back on procrit but now  even with the weekly shots my HGB won't go above 10. The hemo said i could stay at this level for the remainder of tx, Has this happened to anyone? Why isn't it working as well this time? I am so very tired all the time. I keep waiting for my body to adjust. I am only on week 18 (not even sure) so I have a ways to go.

[ladybug52]

I haven't experienced it but a lot have posted that their hgb never got above 10 even on the procrit. Have you asked the Dr. about increasing procrit? Are you doing the 40,000 vials?
I started procrit and my hgb went to 11.3 and now 12, I cut back on the shots so that I'm not taking too much. Good luck
Bug

[sallyo]

Hi,  I am not taking procrit this time, but the last time I treated I did.  My HBG dropped below 8 when I was started and even on the procrit never went much above 9.  I never thought of it as not working but rather keeping me afloat so I could continue. Yes I was very tired at times but the treatment is temporary and I think at some point feeling tired all of the time became my "normal"  I am not suggesting this because I'm not sure it would help but what about folic acid.  Once when I was hospitalized for anemia, the hematologist started me on that.  Anybody know if that was for low red cells?

[nygirl7]

Mine never really went above the same number doing one shot a week.

I had to do two shots a week at 40,000 to bring it up. I finally found out every five days a week was best for me.

Still - my hemo stayed at about 10.5 for the entire course of treatment...but I got used to it because it was a STEADY number for so long.

Did you try and get the epo from the doctor?
We have the same insurance (aetna) and they would NOT approve Procrit for me but DID approve Epogen.

What did the doctor say?  It looks like you have to have more than one shot a week - at least for a while. I did for about 12 months.

[friole]

hi.  I have been wondering how you were doing.  It would be nice if you could get the HGB into the 11's.  Perhaps you can suggest shots every 5 days instead of 7.  There are people that Procrit does not help, but it sounds like it did with you.  It could just be that the serum level of Ribavivin is greater now than it was when you first got the shot that boosted you into the 12's.  I wish they had not taken you off the shot then.  How many once a week shots have you had?

You are doing well, Merlino.  The Ribavirin is working or you would not be anemic. I guess you can adjust to HGB of 10 - many did. I adjusted to 11s - never could get it into the 12s with Procrit, but I would have found it hard in the 10s.  All I can suggest is to scale down on activities - do only what you have to.

frijole

[merlino]

Hi Deb - Called Aetna Specialty Pharmacy - I was told would only cover procrit. Nurse said they would only give me 1 shot a week. I called them this morning. She said being at 10 throughout course of tx would be ok. I think it would &&&& if I stay this tired. They are giving me one shot @ 60,000. The nurse said the Dr would go to 80 and that is the max. I am trying to deal with this the best I can, I just get so tired of being sooo tired!!

Friole, so nice to hear from you. This anemia thing is the one side of tx that is really getting me down. Mouth sores, skinny body - hair falling out etc etc I can handle. My job (which i NEED) has been very demanding lately and I have been on the road quite often. So the anemia is so hard for me to handle. I am becoming quite the cry baby!!!

PS has anyone heard from FLGuy? Haven't seen him post.Hope he is well.

[wyntre9]

Love ladybuttinsky's.  :)

Thanks for the explanation.  That does help put it in perspective.

By this time I know that for G 1's it's basically a **** shoot.

[wyntre9]

Friole,

What did you mean that if the ribavarin wasn't working you wouldn't be anemic?

I'm on week 10 and my HGB is between 11 and 12.  Does that mean the TX isn't effective?  I'm not trying to put you on the spot, just trying to understand.  I have other issues right now with the VL not dropping fast enough and don't even know if I'll achieve the "measly" 2 log drop by week 12.

Merlino,

This REALLY makes sense (NOT).

"Once I hit this Insurance said no more Procrit. So I dropped back down to 9.2. I was put back on procrit but now even with the weekly shots my HGB won't go above 10."

These f***ing insurance companies!

Hang in there and good luck.

[ladybug52]

I'm a buttinsky so here goes my answer to your question to Friole: "What did you mean that if the ribavarin wasn't working you wouldn't be anemic?"
The ribavirin kills the virus but sometimes the red blood cells get killed off too. The theory is that if you have a drop in HGB, then the riba is doing it's job killing off the virus since it's killing the red and white blood cells in it's (riba's) path. does that make sense? The problem is that it's not always a reliable tool since some people don't have a drop in HGB yet clear the virus, others get anemic but don't clear. I know you're body is responding, it's just harder with geno 1 :(

[FL_Gal]

Hang in there!  I hear ya, the exhaustion is the worst part of it.  It makes me weepy too, and it makes me not feel like dealing with anything else.

I have Aetna too.  They approved the Procrit for a year up front, but they only send me 4 vials once each month.

[merlino]

I know what you mean about these insurance companies. I complained to the hemo how can they expect me to get thru this if my hgb will keep going up and down because of insurance regulations. I drop so quickly it slams me. I tried to talk to ins the other day and forget it. Everytime you call you get a different person and have to start explaining all over.

[wyntre9]

I really hope you can get it straightened out ASAP so you can be on the right meds for your condition!

It's absolutely obscene that a patient would be deprived of meds NOT coz of the changing diagnosis by a physician but coz of an insurance companies profit margin.

I'm really ANGRY for you.  I hope you have someone to advise and help you sort this out.

And PLease don't give up.  It's YOUR health on the line.

Good luck and keep us posted.