Procrit immunity

[jt57]

My labs have my doc concerned.  my hgb keeps dropping, yet I am on procrit and have been.  Now on wk 22.  labs this week, hgb has dropped to 7.6.  My dr is concerned that I may have built up an immunity to the procrit.  Also, he wants to drop the ribavirin again.  I was on 1000 mg.  my weight dropped to 120.  he dropped it to 800 mg a couple of weeks ago.  now i am at 116, and because of my hgb, he wants to drop to 600 mg. HELP!  I don't want to stop tx.  I was clear at 4 wks and have stayed that way.  Can anybody shed any light on this?

Jean

[nygirl7]

Jez for those of us who know what it is like to get that low and I mean this from the bottom of my heart - I am so sorry you are going through this. The hema has to help you I've never heard of a doctor insisting on such insanity before. Some refuse to give us procrit altogether but this......knowing you need it and how bad you are and just refusing to give it........wow.

Keep fighting for it Jean you will get it on your own somehow - this is NUTS.

[jt57]

thanks so much!  waiting for a return call now from hema.  will keep you posted.  

your support is great.  don't know what I would do with out all you guys!

Jean

[spectda]

Keeping someone at 8 when you know it's okay to take the procrit now is crazy. No one should have to spend a day at that level beyond what is absolutely necessary. I hope the hemo helps you jean. 24 more weeks! you go girl!

[portann]

Hi Jean,

Keep us posted. This doc sounds totally unreasonable about waiting for you to go below 8. I have no idea if he's right to withhold the procrit due to legitimate health concerns but the hema was hopefully going to figure all this out and get it right.


Congrats on the normal reticlocyte test and get that hema to straighten that guy out and get you through this without your ending up in the ER.


TTYL,

Susan

[jt57]

ok.  reticlocyte test was normal.  hepa dr. seemed happy about that.  (even though he isnt the one who ordered it)  Yet he still says no procrit.  told the nurse to tell me that if we go below 8, we will start procrit again.......cmon!!  What is he thinking???  Will talk to hema dr. tomorrow.  hope he can help me.  
I told the hepa dr.s nurse to tell him that as long as he was prepared to drop what he was doing, such as dinner with his family and church on Sunday to meet me at the hospital when I go below 8, that I would follow his instructions.  If he does not give me procrit until I go below 8, it will take AT LEAST a couple of wks to kick in.  I cannot go a couple of wks below 8.  Being in the 8's is difficult.  He must think I am superwoman.

Jean

[jt57]

thx for the info.  tomorrow will be my 24th interferon injection.....if I can just plug away for 24 more...........

Jean