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?
How much procrit are you taking.?
My husband took two shots a week for 52 weeks or so and at some point, it quit working as well and after working in an attic in the heat doing something a person in his condition had no business doing, (I'm still a little mad at him for it and it was a long time ago now :>) he ended up needing a blood transfusion. He stayed off ladders and out of attics from then on and it it never got that bad again although it stayed low. You probably already have the sense to know to stay out of extreme heat.
. I also might mention that my husband has cirrhosis so his hgb is still below normal even when not treating but we did see it rise a little when we increased his protein consumption , mostly from whey protein shakes and eggs. I don't know if this would help while on TX or not.
Thank you. I am taking 40000 a wk. I do not have cirrhosis. I hope your hubby is ok now. I may add some protein and iron to my diet. I have been staying away from iron because of my high ferritin. But maybe I need it to stay on tx.
Sometimes you have to play with the dosage of procrit.
7.6 is just too low. You might need a transfusion while you are working out the proper dosage to keep you up at an acceptable level.
I was on epo so the numbers are different (i think 40,00 is probably = to the 80,000 I was taking but am not sure).
The doc started me on 40,000 once a week. My numbers didn't go up.
So he changed it to 80,000 once a week and it was too much and made my hemo go up over 12 which is the black box warning. So then we tried twice a week at 40,000 but it seemed to stay up too high. Then we did 40,000 every five days and it kept me at 10.5 or so the whole course of what was left of 72 weeks. I wouldn't drop my riba, especially in the beginning.
Every body is different so it does take a. time and b. proper dosage. Personally I preferred that over dose reduction. At 120 you were heavy on the riba anyway so the 800 would be weight based so if you have to you might be ok anyway.
AT week 22 you are past the crucial 12 week point............still I'd ask him about playing with the dosage trying 20,000 twice a week and see what happens to that.....it sure did help me.
Of course I'm no doctor this is only my personal experience - but it worked for me.
PS If you can get your hemo up to the 10 level you are going to feel AMAZINGLY great. Talk to your doctor......you can't stay where you are now no way that is horrible!
At your weight, with your hgb and the lousey way you probably feel I would not hesitate to drop the riba to 600. With the intention of mainating some amount of incoming riba, much preferable to stopping riba entirely. Und at 4 and in week 22 is very good. Way to hang in there so far!
I think Procrit and Epogen are dosed the same - they're both erythropoietin.
I did 40,000 units of Epogen twice a week.
I would think the doctor might consider increasing your dose of erythropoietin and see if that works.
I’ve heard anecdotal reports that some patients don’t respond to Procrit/epo. I don’t have any articles to support this; I’ve heard it in this forum from other patients in the past, however.
. There are other products such as darbepoetin (Arenesp) that might be worth mentioning to the doctor:
Are you under the care of a GI doc? Another thought; could you ask for referral to a hematologist to take over the responsibility/care of your blood? They might be better equipped to handle this, and more apt to take an aggressive stance?
I dont know why I always thought Procrit was dosed differently, perhaps because I knew at 80,000 it was much greater than the majority of people who were on 20,000 or 40,000. My assumptions usually are wrong if I don't get the facts straight. I'm glad I put the caveat in there so someone could set the facts.
If you are only on 40,000 once a week then seriously I'd ask the doctor about doing like MikeSimon and I did. The epo did the trick though but as Bill said perhaps the long lasting version would be better for you.
Either way have him do something.......God I feel for you!
this is my second tx. I respond to procrit, but he is feeling like I have stopped responding to it. He even said to not take it tomorrow. But I am going to anyway. He is a GI/Hepa. Maybe I should bring in a Hematologist. I just don't feel like the riba reduction has had enough time to make a difference. It has just now been a couple of weeks. on another note, at what point should I consider pushing for transfusion? Being a Rapid responder this time, and almost half way, I do not want to stop!!! I feel my chances of svr are so great.
Jean, you’re probably in transfusion territory right now; my old GI doc considered transfusion at 8.5 g/dL. Granted he might have been a touch conservative, but still…
You must feel like poop, huh?
Does this doctor work out of a GI group? Often they have a hematologist on staff, or they have one to consult with when things get sticky like this..
I don’t know what else to say, other than wish you nothing but the best. I sincerely hope this can be resolved soon; it must feel really crummy right now, with low numbers and anxiety over therapy stuff…
my doc is with a big group. I get labs in the a.m. If my numbers are still in the danger zone, I will call and push for transfusion just for the short term. But I am not going to pass on the procrit like he said. I took it for about 40 of the 48 wks last tx and it worked With riba reduction, more protein, hopefully I will rebound. and maybe I need to up the procrit a little. At least to boost myself for now. Thanks for your help. maybe they do have a hema on staff. I just don't get why he thinks i may now be immune to the procrit. Says it is rare, but does happen. I want to feel better, and soon. I can't keep on this way.
I don’t know if he suspects you might be developing antibodies to epo or not; this only occurs rarely, I think.
The problem seems to be if a person develops antibodies to exogenous epo like Procrit, they also develop them to their own epo too. Ask about the Darbepoetin (Arenesp); I think this might be an option based on several papers I’ve looked at:
They are going to be starting trials for 24 week boceprevir tx very soon so there is some thinking that 24 weeks will bring good results. I understand that they are competing with telaprevir, but considering you are at week 22 and sent und so early you have a very very good chance of svr. Be careful with messing around with that 7.6 hgb, I can't imagine how you must be feeling.
Sorry, I thought you were in a boceprevir trial from another thread you posted on! Good luck with everything, and honestly I would take your doctors advice considering how low you are.
Good luck - Dave
HGB is up to 8.6!!! out of transfusion territory!! Dr. had said he needed 8.5 to not pull the procrit and to not reduce to 600. I prayed all night!! At least I have bought myself another week! He is going to think about your suggestion, Bill, on the Arenesp. Just said to keep on with the procrit for now.
I still don't feel great. Mid 9's is about as low as I can get and still feel somewhat normal. Hopefully this wil continue to increase. ANC .5, about the same. But Lymphocites were extremely high this time. 66. Wonder what that is about....
Thanks for all your support! Things look brighter today!
I'm glad you're numbers are back up to your doc's comfort zone. In the future, if he talks about reducing your riba to 600, don't panic. I know that none of us like to have to reduce meds but, at your weight, 600 isn't that far out of the ballpark especially if it's a short term reduction.
For example, when I started TX (geno 1b) I weighed 120. Doc started me at 800 riba and I stayed at that all the way through TX and my TX was successful. You weigh about the same as me and you started at 1000 so you started off TX with a big bang and no wonder your hemo dropped. Some can tolerate the higher doses per body weight and some can't.
Glad to see that your hgb is back up in the barely bareable range, at least!
My husband started on procrit at 8.1 & dose-reduced (1200 to 1000 to 800 in 3 weeks), but it didn't work fast enough to save him from transfusion (hgb got down to 7.3). His nurse was entertaining the idea of testing for "procrit immunity", but his hgb finally started to pick up about 5 weeks after starting procrit (just a late-bloomer, we guessed). After about 8 weeks of procrit, though, his hgb started to slide again and he's been on 40,000 twice a week since then (that was week 24 or so) and 800 riba, and his hgb stays in the 10-11 ranges. Hope that helps.
Thanks! They did not mention any testing for the immunity. But I really feel like I just needed the dose reduction, and like your husband, it did not kick in quickly enough to stop my hgb from tanking to 7.6 But at least it is up now, and maybe we can keep it that way. I have been on procrit since about wk 4, and it has been working ok....staying in the high 8 to low 9 range. Personally, I think it would not hurt to up my dosage.....
I remember Trish brought this up and I think was taking supplemental iron. I don't think her hemoglobin ever got as low as yours, though. I'll look for that thread.
My gosh, how are you feeling? :(
"Prior to and regularly during PROCRIT therapy monitor iron status; transferrin saturation should be greater than or equal to 20% and ferritin should be greater than or equal to 100 ng/mL. During therapy absolute or functional iron deficiency may develop and all patients will eventually require supplemental iron to adequately support erythropoiesis stimulated by PROCRIT."
Here are some discussions, including one concerning Debc's relevant situation. She provided a super article from the Cleveland Clinic:
During EPOGEN® therapy, absolute or functional iron deficiency may develop. Functional iron deficiency, with normal ferritin levels but low transferrin saturation, is presumably due to the inability to mobilize iron stores rapidly enough to support increased erythropoiesis. Transferrin saturation should be at least 20% and ferritin should be at least 100 ng/mL.
Prior to and during EPOGEN® therapy, the patient’s iron status, including transferrin saturation (serum iron divided by iron binding capacity) and serum ferritin, should be evaluated. Virtually all patients will eventually require supplemental iron to increase or maintain transferrin saturation to levels which will adequately support erythropoiesis stimulated by EPOGEN®. All surgery patients being treated with EPOGEN® should receive adequate iron supplementation throughout the course of therapy in order to support erythropoiesis and avoid depletion of iron stores
Sorry, JT, I may have overloaded you with old threads but I so hope you can get to the bottom of this and that nothing is being missed by your medical team.
Best wishes on fixing this soon. I can't imagine how you feel with such low hemoglobin. I only got into the nines and sometimes felt I could barely breathe. One day, I literally struggled with whether to just pee in bed or get up enough energy to crawl to the bathroom. Hubby prevailed on me to do the latter.
thanks to both of you! Just got a call from my dr. he got the rest of my testing back, B12, folate, normal, iron, 309, ferritin, 4000. I have struggled with high ferritin before and during my last tx. It has not been normal, but this is the highest it has ever been. doc says he has never seen it this high. saturation is 97%. He wants me to stay at 800 mg on the riba. but to STOP procrit! I KNOW i will tank with out the procrit. so I really don't know what to do. He says there is no way for him to know if my increase to 8.6 hgb was from the dose reduction, without stopping the procrit. He is not sure if my body is responding to the procrit any longer. I don't agree. I had to take procrit almost the entire time last tx, and needed it rather quickly this tx. He said "if it drops to the 6's or 7's, we can start it back..........I can't take an hgb in the 6's or 7's!!!! I think if anything, I need to boost my procrit for a wk or say and get stable. HELP!!!
My doctor had me on Ferrous Gluconate and B12 when he started me on Procrit because my iron stores were low, he said. My doc also pulled me off of Procrit when my hgb went up ... only to have to put me back on it again. After that, we stuck with a maintenance dose once my hgb was in good range again so that it didn't tank. The problem with removing procrit entirely is that it takes awhile for it to start working again so it's better, in my opinion to switch to a maintenance dose rather than remove it entirely.
I don't know what to say about your Ferritin, I'm no expert on that. A quick read says iron stores and ferritin are not the same thing and it's iron stores that matter, from what I understand, on what makes procrit less effective when there aren't enough and there are specific tests for that, again from what I understand. (I'm sorry, I'm rushing this as I'm on the way out the door but wanted to respond at least a bit.)
I'd be rather reluctant to pull the procrit entirely and even look at hemochromatosis even if just to rule it out. Good luck with this.
Thanks Trish. Hemocromotosis test was neg. I agree with you pulling the procrit is not the thing for me to do. If I do, I see myself having to get a transfusion, because I will TANK and the procrit does not work fast enough once it is out of your system. I keep telling the dr. that this isnt my first rodeo with this tx and procrit. (He is a different dr than i had the first time) I don't know what to do. I want to continue on with the procrit, I have enough of it stock piled. But then he will think I don't need it....
Were you able to arrange a consult with a hematologist, Jean? Although I'm assuming by this time he might have been in contact with one himself already.
From what little I read about the development of epoetin antibodies, it's not something to mess with; but of course, I'm not even remotely an expert on any of this. True development of epoetin antibodies looks like a very rare, but life threatening condition; the antibodies are not selective, and attack the patient's own supply of epo as well. Yikes!
I sure hope this straightens out quickly; you must feel absolutely awful.
Thanks Bill. I have been referred to a hema, but its 2 weeks away. Trying to push for a quicker appt. I'm tempted to continue on with the procrit anyway, but the dr. may have a really valid point. I just know last tx I stayed on it the whole time. No prob. Yes. he seems to be afraid that I may have developed antibodies to procrit....what to do.
Yeah, I feel so lousey. Guess thats why I am so easy to cry....for no reason...
you are in a really tough spot. why don't you call the hemo's office again and see if you can get in earlier. Maybe they will realize this is serious. I know that's often not possible, but as bill said you don't want to mess around with this. It's worth a try.
Hematologists often work hand in hand with oncology; by the nature of their job description, I’d think they’d keep rather flexible and accommodating calendars, particularly if they understand you’re a work in progress. I’m with Dave—try to call their front desk yourself, and re-explain the situation, making sure they understand this is time sensitive.
Gosh, good luck; everyone I have spoken with in the past said when this happens, they felt like cr@p; utter cr@p.
I say push with every bit of strength you have left to see the hematologist TOMORROW.
I don't know the best way to lobby for this but a couple of scenarios are going through my head - e.g., portray yourself as desperate to not compromise tx because you're so heavily invested your second time around, as unwilling to stop Procrit despite the doc's orders, as having a 'stash' of Procrit you want to use, even though your doc thinks you have antibodies to it (which could endanger you if you disregard his advice)...and so on, in order to make a dramatic plea for an emergency appointment.
I'm not saying this strategy will work and maybe someone has a better idea but that's what I might do if I wanted that appointment tomorrow.
I think if he understood you're desperate (and I'm not saying you are), he may be able to find time to see you tomorrow or the day after.
Other than reinforcing Dave's and Bill's views to see the hematologist pronto, it would be wrong for me to influence you one way or the other. Your situation is way out of my depth and I just want you to be safe, not sorry or worse.
Please muster what little energy you have and try to get in to see the hematologist.
If not, I suggest following your doc's advice, in case he's right about the epoetin antibodies. I hope he's not.
It's good you have an appointment coming up with a hematologist - perhaps you can get your doctor to agree to a maintenance dose of procrit rather than lose it entirely until you can get in to see the hematologist as a compromise if nothing else. You do have a history of tanking without the procrit. Incidentally, it took five weeks before it kicked in and I saw results for me when I first went on it also.
Bill...this article is about using epo for cats and dogs and that they react differently to human epo as it's different than their own. I'm not sure that the results and information on antibodies can be directly translated as also occuring in humans. Whatcha think?
"While human recombinant erythopoietin works reliably in dogs and cats, it is not quite the same protein as what a dog or cat would make for itself and in some patients the immune system of the pet can recognize the human protein as foreign. Antibodies may develop in response to its exposure which not only destroy the human erythropoietin but the pet's natural erythropoietin as well."
I eventually wound up taking 100,000 units of Procrit a week to somewhat stabilize me during TX.
Because doctor did not want to go higher, the final change which seemed to help was splitting the dosage across the week. The idea being to try and maintain a somewhat level dosage throughout the week instead of one large boost once a week.
Perhaps something you may want to consider if you're going through the same HGB roller coaster ride I was on during TX. Wish you well.
Just like GO I was on 80,000 a week taking half every five days as I've posted before. It was what finally helped me.
I agree with the others call the hema and explain how low your number is and where you will be in two weeks without the procrit on board. Tell them you will sit and wait patiently for them to have a break in their schedule - whatever it takes to be seen TOMORROW. Or try to find a hema that will understand. You cannot go on this way it is dangerous to your health and course of treatment - explain that to them perhaps a hema doesn't understand about tx at all (well explain it to the person who answers and ask them for the nurse practitioner who might have a clue - a receptionist who answers the phone might not understand the gravity at all).
I was seeing a hema last tx. THat is the one they are getting me in with. But since he has my records from last tx (although I was released from him), they are just going to fax over all my labs, and ask him to look over and call me asap. I spoke with his nurse, and she is going to explain everything to him. Hopefully, i will get some answers, SOON.
There are several causes of hyporesponse to Procrit.
First I would look at the simple stuff.
Are you keeping the Procrit refrigerated at all times?
Are you getting it in the mail and is it kept refrigerated until you receive it.
Change pharmacies, perhaps the one you use now doesn't keep it refrigerated.
Check the expiration date.
Review your injection technique. Do the injections in an area where you have FAT.
Other causes of hyporesponse
1. Thyroid abnormalities can impact response to Procrit. Since treatment can cause low or high thyroid, ask your doctor to check your thyroid.
2. Untreated infections....ANY infections....like sinus, untreated herpes, wound infections, etc.
3. Lack of iron, Folate or Vitamin B12 (ask for a copy of your lab so you can recheck).
4. Malnutrition. Since you're loosing quite a bit of weight, this is a real possibility.
Pure red cell aplasia (deveoping antibodies) has only happened during hep c treatment with the use of ARANESP. When it happens, it causes LOW RETICULOCYTE COUNT and neutralizing antibodies to native erythropoietin (for which you can be tested).
Also, when you have pure red cell aplasia, the hemoglobin keeps dropping. It doesn't get better like yours did.
These are the recommendations for the use of Procrit....
If inadequate hemoglobin response after 6-8 weeks while on epoetin alfa increase to 60,000 units weekly.
If the hemoglobin continues to fall despite the use of Procrit, the ribavirin dose should be reduced or discontinued AND consider CONTINUING or INCREASING the Procrit.
It does not say to stop it like your doctor wants to do.
Best of luck to you.
Something you said keeps coming back to me. You said you've been stockpiling Procrit. That makes me wonder if you're saving leftovers. Be aware that it doesn't contain a preservative and it can loose its potency if left outside the refrigerator.
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
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!
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.
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?
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.
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.
Vitamin B12 Levels May Help Predict Response to Interferon-based Therapy for Chronic Hepatitis C
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.
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.
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.
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!
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.
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.....
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....
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.
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!
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!
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