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]

I agree with you JT the anemia (and mine wasn't as bad as yours even!)  was just dreadful.  Thank God it seems that somebody now understands that you need to be on the Procrit regularly, nobody should be made to suffer as much as you have been when there is a viable solution.

Enjoy the 11 while you have it!!!!!!  Hopefully the procrit will kick in before the number drops too much and you can maintain somewhere in that area......you'll have such a better course of treatment because of it!

[jt57]

yes I am still treating.  RVR at 4 weeks and I am 25 wks into this.  Not giving up now!!!  Hope to stay on top of procrit and I should have no more problems like that.  My hepa should feel pretty stupid, in my opinion.  I tried to tell him...

Bill, severe anemia in my opinion is the worst part of this treatment.  I hope no one has to go through what I have!  Thanks for caring!

Jean

[Bill1954]

Jean, you’re perseverance is amazing. I haven’t experienced any of this myself; I’m only reacting to what others have told me about this before. Thanks for sharing it, and I hope you plow through this unscathed and eventually successful.

Take care—

Bill

[spectda]

Hi jean-
Hell you've been through a lot. Are you still treating through all of this?
take care,
Dave

[jt57]

well, labs on Wed ( last wed the 18th?)  went in cuz I could not breath well and was worn out.  hgb was 7.4   My GP called hema.  He admitted me to hosp.  Gave me three units of blood.  Did cat scan for clots, ekg for heart probs, bp was 80 over 52  but keep boucing up to the 90's.  I stayed for about 36 hours.  The hema did not say it, but I could tell by his facial expressions and body language that he could not believe I was off the procrit.  Had me start it the next day.  Oh, and My hep nurse called me the next day to tell me to start procrit asap......had to put me on oxygen as well.  I HATED ALL THAT.  My veins are tiny and it is difficult to find them, so it was pretty traumatic for me.  could have been avoided.  But I feel so much better now.  When I left the hosp I was at 11.1 hgb.  Haven't been that high in almost 6 months. ...felt Like I could run a marathon....

[jt57]

Thanks all.  well, labs yesterday    hgb went down to 8.6.  last week it was 8.8  did not drop much.  My last shot of procrit was 13 days ago, so I know I still have some in my system.  But by this time next week, I will be much worse off if my hema does not jump in and make some drastic recommendations...breathing is a little tougher today.  If I start feeling worse, I will go to ER.  Bet I get something done there?????  Where there is a will, there is a way.   I'm sick of feeling like a dead person.....

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

[spectda]

Hi Jean-
It's good to hear your on the right track now. let us know when you get your results.

I don't know why your b12 would be so high, maybe someone with more knowledge will comment.  Interestingly enough B12 helps fight the anemia, It doesn't seem to be working for you, although perhaps the high level is your body's way of fighting back.

http://www.lef.org/protocols/infections/hepatitis_c_01.htm

Protecting against ribavirin-induced anemia. Hemolytic anemia can result from the use of ribavirin in about 10 percent of cases. Folic acid and vitamin B12 (as methylcobalamin) may protect against ribavirin-induced anemia. The methylation-enhancing effects of both folic acid and vitamin B12 will also improve the liver-protecting effectiveness of S-adenosyl-L-methionine (SAMe) (Bottiglieri T et al 1994; Swain RA et al 1997). Serum ferritin levels are closely monitored during interferon and ribavirin therapy to ensure that iron levels stay within the normal range. Iron supplements are to be taken only under direction of a healthcare provider.

Here is a study correlating b12 with response to treatment. Hope it works this way for you.

http://www.hivandhepatitis.com/2009icr/ddw/docs/060509_b.html

Vitamin B12 Levels May Help Predict Response to Interferon-based Therapy for Chronic Hepatitis C


http://www.ncbi.nlm.nih.gov/pubmed/20196801

Serum B12 levels predict response to treatment with interferon and ribavirin in patients with chronic HCV infection

It's really tough dealing with the issues you have dealt with on top of the normal hardships of tx. You keep plugging away, even if you feel you had no choice. i really hope you get the well deserved svr.

I hope you get some answers soon,  Dave  

[jt57]

thanks, but I don't think I'm amazing.  just have no choice.  Had the retic test, waiting for the results, which should be tomorrow.  but for now, no procrit.....i know I will tank really fast.  this is really frustrating.  btw, my b12 was 1500!  never been high.  always normal.  think this means anything?

Jean

[nygirl7]

got lab results yesterday hgb 10.2 wbc 2.8 hgb 8, 4 weeks on procit, had blood work today, tested neg for hep c at 4 weeks i am new at this so forgive, 9 weeks on tx geno2   "

it sounds like you are doing great and I bet you are feeling so much better now that your hemo is up from 8.  Once mine went up to about that level I was able to function again. It sure feels much better going up rather than down doesn't it?  When you first go down to ten it's miserable but up to 10 feels OK.  Just make sure you don't go over 12 I believe that is the cut off point and why we worked so hard to keep mine at about 10.5.

GOOD LUCK keep up the good work.

[jt57]

I could not get that link to pull anything up.  (The last one you sent).

Jean

[jt57]

no, i do not know what my fasting blood sugar is.  Should I find out?


Jean

[CoWriter]

"nice to know anemia and interferon could be repsponsible for my high ferritin, even though my doc says he has never seen anyones this high??"

--------------------

Here's a good article on causes of high ferritin you can show your doctor....

http://scielo.isciii.es/scielo.php?pid=s1130-01082009000100004&script=sci_arttext
.

BTW, do you know what you fasting blood sugar is?

Co

[spectda]

I think we are all glad you are under your hematologists care! I imagine even making these phone calls at your hgb level is tedious. Your amazing!
I hope it all goes well and is resolved promptly!
Dave

[portann]

Sounds to me like you're being seen by the hema now, instead of in two weeks!!

Or at least doing bloodwork for him today, instead of in two weeks.

Way to go, gal, you did greatttttttttttttttttttttttttttttt!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now keep us posted and find some fat so you can inject. :)


Best,

Susan

[jt57]

thanks guys.  going for labs again this am.  will be doing the retic testing as well.  Per my hemas orders.  
When I said stockpiling, what I meant was I had refills from my tx before, even after I stopped and I got them all refilled.  somehow I ended up with about 6 months worth.  I have an extra fridge and it has stayed refrigerated.  My pharmacy keeps it refrigerated as well.  I don't think that is a problem.  However, I could reevaluate my injection site.  I have little fat anymore, so I probably need to take a look at that.  We checked my b12, folate, etc,.  all normal.  I am printing all this out to take to my dr.  nice to know anemia and interferon could be repsponsible for my high ferritin, even though my doc says he has never seen anyones this high??  Ill keep you all posted.  thanks again

Jean

[rmv930]

got lab results yesterday hgb 10.2 wbc 2.8 hgb 8, 4 weeks on procit, had blood work today, tested neg for hep c at 4 weeks i am new at this so forgive, 9 weeks on tx geno2  

[portann]

Hi Jean,

Any answers yet?

I'd print out what Co said above and fax it to your docs.

Now it's bugging me to know whether your Procrit was stored properly at correct temperatures. Wouldn't that be something?

Must run but hope to hear from you soon. Nail down that meeting with the hema!


Susan

Susan

[CoWriter]

By the way, anemia can increase your ferritin...and so can interferon.

Co