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I intend to argue with him about any dose lowering of any kind...but I don't know what the basis of my argument would be other than I don't want to lose my chance at SVR...even if it kills me. So...you forum wizards please come forth & help me out...TriHepGuy, are you there?
Ribavirin is related to the red counts (hemoglobin, hematocrit, etc.). So it would only be lowered in relation to those results, not WBC.
The general intervention vs. dose redution protocol, bearing in mind this can vary greatly from doctor-to-doctor, seems to be:
- put a patient on Neupogen when their WBC is in the 1.5 or below range and/or when their ANC (Absolute Neutrophil Count) is in the 750 or below range.
- put a patient on Procrit when the Hg is around 10.
- and the level of greatest concern regarding platelets is anything near or below 20,000.
In regards to clearance and SVR, there is never any advantage in lowering dosage of either interferon or ribavirin - only the potential for disadvantage. I would make sure to ask your doctor at which blood level results for the above tests that he will intervene with Neupogen and Procrit. And tell him that your preference is to have him act pro-actively (i.e. - before the levels creep too low) with the goal of maintaining dosage level throughout tx. The only reason to lower dosage is if there is a continuing problem AFTER attempting Neupogen or Procrit. Otherwise they are playing it overly cautious or are out-of-step with what is now standard Hep C tx protocol. Your goal is to be on this once, giving it the best shot available. And that 'best shot' includes Neupogen and Procrit, should they ever be needed.
Here are a couple of papers related to low WBC/ANC (a/k/a - neutropenia):
(this is a PDF file) - <a href="http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_C/Neutropenia.pdf">Neutropenia during combination therapy of interferon alfa and ribavirin for chronic
hepatitis C</a>
(from the paper):
"<i>In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and may not require dose modification. These findings support a revision of current criteria for exclusion and dose modification based on white blood cell counts in the treatment of hepatitis C. These modifications would expand the proportion of patients who could receive interferon-based therapy for hepatitis C.</i>"
<a href="http://www.natap.org/2003/hepUpdate/day5.htm">Threshold for neutropenia in the adjustment of interferon treatment in HCV infection</a>
(from the paper):
"<i>Based on these preliminary data, it can be concluded that the onset of neutropenia during combination therapy with interferon and ribavirin is not associated with subsequent infection, even in patients with post-hepatitis C cirrhosis. However, changing the dose of interferon affects the likelihood of achieving a sustained virologic response.</i>"
Also, browse this page to find some more papers realted to neutrpopenia and anemia:
<a href="http://www.hivandhepatitis.com/hep_c/hepc_news_anemia.html">Hemotological Disorders / Neutropenia and Anemia</a>
Here is a paper from the Cleveland Clinic that deals with managing the sx's of anemia, neutropenia and thrombocytopenia (i.e. - low platelets):
(this is a PDF file) - <a href="http://www.ccjm.org/PDFFILES/hepadOng.pdf">Managing the hematologic side effects of antiviral therapy for chronic hepatitis C: Anemia, neutropenia, and thrombocytopenia</a>
The Handbook link (#3) should provide you with info on the minimal acceptable values of RBC's & WBC's in Tx. There's a lot of other useful data there as well & I highly recommend going thru it so you can see what to expect while being on Tx.
I was just going to open a thread today asking you and all the other newbies to check in. Purely selfish, as I was beginning to worry about you. So howdy! How are you feeling, besides anxious?
As for this WBC issue, a few points of clarification:
Neutropenia, which is defined as an absolute neutrophil count of <1000/mm, is a side effect of interferon, not ribavirin. Hepatologists tend not to be overly concerned about low WBC counts, as there is little evidence of infections developing amongst hepatitis patients on treatment, unlike cancer patients doing chemotherapy. If you should need medication for this, however, you would be assigned Neupogen.
Now, as for Procrit: Hepatologists tend to prescribe Procrit when the patient complains of breathlessness or dizziness (two early signs of anemia) at Hgb levels which other doctors might consider normal, i.e. around 11. But keep in mind that Hemoglobin is always looked at in relationship to Hematocrit. If your Hgb is a bit low, but the Hematocrit is in the middle of normal range, you're probably not in need of medication. Your physical symptoms are the proper determinants here.
The lab reports should indicate the normal ranges, as they vary slightly from lab to lab. Just know that both your WBC's and your platelets have to drop very, very low levels before anyone will get excited. I know someone with 36,000 platelets who is being kept on tx. (Normal is roughly 140-400, measured in thousands.) The danger zone is reached when platelets drop below 20,000 per microliter.
Thanks so much for the great posts! I will print them out & do some studying. It is now revealed to me with shocking clarity that I do not know ANYTHING about this stuff, so I better be finding out. I really do appreciate it so much.
Califia, thanks for asking. I felt so good on week one that I was afraid I'd gotten sugar pills & a syringe of water. But the labs said "no, it's the real thing..." So after week 1: AST 200 ALT 235. Then white blood cells 3.3 (3.8--10.8 thous/mcl), platelets 120 (140--400 thous/mcl) and absolute neutrophils 1172 (1500--7800 cells/mcl). The dr said it was all fine, no worries, so I just cruised on back to my life without another thought until now.
I knew I wasn't going to get away with feeling that good forever, but I wouldn't think of complaining at this point. After shot #2 last Fri., I had to have a long nap on Sat. and felt stupid and uninspired on Sun. I've had more forgetfulness & confusion this week than I've ever had in my life--I'd be really scared if I couldn't blame it on treatment. But I've been able to function in my work and do things that are meaningful to me, so I'm grateful for that. I decided to plant some flowering trees that I've been wanting to plant for 10 years. I'm not sure if shoveling dirt is a prescribed activity while on treatment...I just figured my muscles are going to ache and I'm going to take tylenol anyway, so I may as well give them something to ache about. As it turned out, there wasn't much difference in pain level from my usual activities and shoveling dirt, so I'll be able to get the others in the ground soon. Sometimes I take vicodin, leftovers from an old prescription that I still have around. That is when I am so achey (achy) that I am regularly emitting little moans. I have an African Grey parrot that sighs wearily in my voice, and I don't need him moaning. He taunts me by reading my body language, and if I'm not looking energetic enough, he ...sighs... He likes making me feel old and pathetic, because I then get mad at him and he enjoys the drama. A great bird.
Thanks again, you all. I don't know what I'd do without you, and brag about you to everyone who will listen. There's so much that's good going on here.
Hope you have baseline (pre-tx) figures to measure the changes against. But no matter! The fact that you're actually _seeing_ your doctor after one week is a very encouraging sign.
Flowering trees, wise old parrots, what an enchanted life you lead. Talk about complementary therapy...this is IT. You're going to do great.
Last night I hunkered down with the info you gave me…these things in an unfamiliar language with important measurements… I printed it out, put it in my purse and knew what I needed to find out. So today at the dr, I got one question out and then …. ? Somehow, my questions seem to be answered, but without the specificity I had planned. The doc said that my wbc’s (2.7) & absolute neutrophils (845) are continuing to plummet. My rbc’s are just fine, believe it or not. Platelets are 115. AST 79 & ALT 116—(lowest in 2 years.) And he said if the wbc’s keep going down, he’ll just start me on Neupogen. He also said we’d use Procrit if that were ever called for, but right now, things look good there. I don’t know what I was remembering about dose lowering…maybe he said that in connection with platelets getting too low. (I guess that’s the only choice when that happens (?)—I tried to read about that last night and couldn’t get the link to work.) Maybe I just dreamed up the whole thing. As you pointed out Califia—maybe just angst. I had to think about it for awhile before I realized it was true.
The dr asked me how I was feeling on a scale of 1 to 10, and I said “10”…that I’m really a little worried about feeling so good—can we get my thyroid tested next time, and he said yes. He also said the interferon can make you a little manic sometimes, so don’t get off the deep end with spending money or something, and if my husband thinks I’m too weird, maybe some xanax would be in order. I’m glad to hear it might be just the interferon and not my thyroid spiraling upward, only to later crash in a place I don’t want to be.
Actually, my happy state of mind seems based on very real things to me. I was needing a major change in my life, a shift in the way I look at things and the way I do things—for years. When I found this forum, everything started to change—in order to prepare for being sick from treatment, I had to modify my life. The more I modified it, the better I liked living it. I feel good that, after 4 yrs of living in fear & denial, alternative medicine quacks etc., I'm confident that I am doing what I should be doing--and the rest is in someone else's hands. It seems to me that more good things have just “come my way” in the last few months than they have in years. The doc I have was recommended to me by someone on this forum. I have followed advice given here, and I’m doing well so far. You all have been a huge comfort to me, and all the info is here to drive the fear back and progress rationally.
Yes, Califia, I do have a pre tx baseline. The agenda: test & see him weekly for the first 3 wks of tx—then skip a week and test again & see him. Next test will include the PCR. The doc says he predicts I’ll be clear, but I bet he tells all the patients that…
I wouldn’t say the parrot is so wise, but..eerily human sometimes. He gets very agitated and sometimes wolf whistles when I pass his cage unclothed on my way to the shower (not sauntering sexily, I can assure you). No one has ever taught him that whistle. And I’ve been trying to get him to say “I love you” for the last 8 years (he knows how to say it—he said it for a couple of years), and he just responds with a baleful stare. I ask you—does this remind you of anyone you know?
Anyway, thank you all again, more than words can say. It’s a gorgeous spring day in FL and not one thing has gone wrong, so it can’t be too weird to feel like a 10. I’m off to take my shot…the number will probably be down by tomorrow, but that’s ok too. If I start sounding like Ned Flanders on the Simpsons, you will tell me, right? Badiddly bye now…
my husband is in hospital now he started his first injection of pegasys interfuron last thursday eve and had started the riboviron on wednesday..His white blood cell count was too high as per blood results and docs opinion..I was on interfuraon only and took 3 to 4 injections a week for about 16 months..Being that he has aortic valve is this riboviron dangerous foir him I am very sad confused and worried anyone in the same or been in the same situation plzz help with info thx cccoff
This is something that definitely you need to ask you dr because I have always read that it can effect the heart and you should be monitored. I know while on tx,,,my dr always checked my heart. I think it even says on the box.
the ribavirin causes hemolytic anemia and this can cause cardiac problems. You should not allow his hgb to drop too low, insist on Procrit if your insurance covers it.
http://www.hcvadvocate.org/news/newsRev/2004/HJR-1.9.html
http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf
http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&refid=2&id=7F4D5D923717CCD885256CD90024FEB2&c=&newsid=8525697700573E1885256F92002E8327&u=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=15660393&ref=/news/content.nsf/SearchResults?openform&Query=ribavirin&so=date&id=7F4D5D923717CCD885256CD90024FEB2
http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&newsid=8525697700573E1885256F92002E8327&topabstract=1&u=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=15660393
This is only a partial list that I can create quickly. I'm sure that our INFO MAN....aka THG & others will provide you with more info.
Good luck all,
Ben
The general intervention vs. dose redution protocol, bearing in mind this can vary greatly from doctor-to-doctor, seems to be:
- put a patient on Neupogen when their WBC is in the 1.5 or below range and/or when their ANC (Absolute Neutrophil Count) is in the 750 or below range.
- put a patient on Procrit when the Hg is around 10.
- and the level of greatest concern regarding platelets is anything near or below 20,000.
In regards to clearance and SVR, there is never any advantage in lowering dosage of either interferon or ribavirin - only the potential for disadvantage. I would make sure to ask your doctor at which blood level results for the above tests that he will intervene with Neupogen and Procrit. And tell him that your preference is to have him act pro-actively (i.e. - before the levels creep too low) with the goal of maintaining dosage level throughout tx. The only reason to lower dosage is if there is a continuing problem AFTER attempting Neupogen or Procrit. Otherwise they are playing it overly cautious or are out-of-step with what is now standard Hep C tx protocol. Your goal is to be on this once, giving it the best shot available. And that 'best shot' includes Neupogen and Procrit, should they ever be needed.
Here are a couple of papers related to low WBC/ANC (a/k/a - neutropenia):
(this is a PDF file) - <a href="http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_C/Neutropenia.pdf">Neutropenia during combination therapy of interferon alfa and ribavirin for chronic
hepatitis C</a>
(from the paper):
"<i>In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and may not require dose modification. These findings support a revision of current criteria for exclusion and dose modification based on white blood cell counts in the treatment of hepatitis C. These modifications would expand the proportion of patients who could receive interferon-based therapy for hepatitis C.</i>"
<a href="http://www.natap.org/2003/hepUpdate/day5.htm">Threshold for neutropenia in the adjustment of interferon treatment in HCV infection</a>
(from the paper):
"<i>Based on these preliminary data, it can be concluded that the onset of neutropenia during combination therapy with interferon and ribavirin is not associated with subsequent infection, even in patients with post-hepatitis C cirrhosis. However, changing the dose of interferon affects the likelihood of achieving a sustained virologic response.</i>"
Also, browse this page to find some more papers realted to neutrpopenia and anemia:
<a href="http://www.hivandhepatitis.com/hep_c/hepc_news_anemia.html">Hemotological Disorders / Neutropenia and Anemia</a>
Here is a paper from the Cleveland Clinic that deals with managing the sx's of anemia, neutropenia and thrombocytopenia (i.e. - low platelets):
(this is a PDF file) - <a href="http://www.ccjm.org/PDFFILES/hepadOng.pdf">Managing the hematologic side effects of antiviral therapy for chronic hepatitis C: Anemia, neutropenia, and thrombocytopenia</a>
TnHepGuy
The Handbook link (#3) should provide you with info on the minimal acceptable values of RBC's & WBC's in Tx. There's a lot of other useful data there as well & I highly recommend going thru it so you can see what to expect while being on Tx.
As for this WBC issue, a few points of clarification:
Neutropenia, which is defined as an absolute neutrophil count of <1000/mm, is a side effect of interferon, not ribavirin. Hepatologists tend not to be overly concerned about low WBC counts, as there is little evidence of infections developing amongst hepatitis patients on treatment, unlike cancer patients doing chemotherapy. If you should need medication for this, however, you would be assigned Neupogen.
Now, as for Procrit: Hepatologists tend to prescribe Procrit when the patient complains of breathlessness or dizziness (two early signs of anemia) at Hgb levels which other doctors might consider normal, i.e. around 11. But keep in mind that Hemoglobin is always looked at in relationship to Hematocrit. If your Hgb is a bit low, but the Hematocrit is in the middle of normal range, you're probably not in need of medication. Your physical symptoms are the proper determinants here.
The lab reports should indicate the normal ranges, as they vary slightly from lab to lab. Just know that both your WBC's and your platelets have to drop very, very low levels before anyone will get excited. I know someone with 36,000 platelets who is being kept on tx. (Normal is roughly 140-400, measured in thousands.) The danger zone is reached when platelets drop below 20,000 per microliter.
Hope this helps! And good luck tomorrow.
Califia, thanks for asking. I felt so good on week one that I was afraid I'd gotten sugar pills & a syringe of water. But the labs said "no, it's the real thing..." So after week 1: AST 200 ALT 235. Then white blood cells 3.3 (3.8--10.8 thous/mcl), platelets 120 (140--400 thous/mcl) and absolute neutrophils 1172 (1500--7800 cells/mcl). The dr said it was all fine, no worries, so I just cruised on back to my life without another thought until now.
I knew I wasn't going to get away with feeling that good forever, but I wouldn't think of complaining at this point. After shot #2 last Fri., I had to have a long nap on Sat. and felt stupid and uninspired on Sun. I've had more forgetfulness & confusion this week than I've ever had in my life--I'd be really scared if I couldn't blame it on treatment. But I've been able to function in my work and do things that are meaningful to me, so I'm grateful for that. I decided to plant some flowering trees that I've been wanting to plant for 10 years. I'm not sure if shoveling dirt is a prescribed activity while on treatment...I just figured my muscles are going to ache and I'm going to take tylenol anyway, so I may as well give them something to ache about. As it turned out, there wasn't much difference in pain level from my usual activities and shoveling dirt, so I'll be able to get the others in the ground soon. Sometimes I take vicodin, leftovers from an old prescription that I still have around. That is when I am so achey (achy) that I am regularly emitting little moans. I have an African Grey parrot that sighs wearily in my voice, and I don't need him moaning. He taunts me by reading my body language, and if I'm not looking energetic enough, he ...sighs... He likes making me feel old and pathetic, because I then get mad at him and he enjoys the drama. A great bird.
Thanks again, you all. I don't know what I'd do without you, and brag about you to everyone who will listen. There's so much that's good going on here.
Flowering trees, wise old parrots, what an enchanted life you lead. Talk about complementary therapy...this is IT. You're going to do great.
The dr asked me how I was feeling on a scale of 1 to 10, and I said “10”…that I’m really a little worried about feeling so good—can we get my thyroid tested next time, and he said yes. He also said the interferon can make you a little manic sometimes, so don’t get off the deep end with spending money or something, and if my husband thinks I’m too weird, maybe some xanax would be in order. I’m glad to hear it might be just the interferon and not my thyroid spiraling upward, only to later crash in a place I don’t want to be.
Actually, my happy state of mind seems based on very real things to me. I was needing a major change in my life, a shift in the way I look at things and the way I do things—for years. When I found this forum, everything started to change—in order to prepare for being sick from treatment, I had to modify my life. The more I modified it, the better I liked living it. I feel good that, after 4 yrs of living in fear & denial, alternative medicine quacks etc., I'm confident that I am doing what I should be doing--and the rest is in someone else's hands. It seems to me that more good things have just “come my way” in the last few months than they have in years. The doc I have was recommended to me by someone on this forum. I have followed advice given here, and I’m doing well so far. You all have been a huge comfort to me, and all the info is here to drive the fear back and progress rationally.
Yes, Califia, I do have a pre tx baseline. The agenda: test & see him weekly for the first 3 wks of tx—then skip a week and test again & see him. Next test will include the PCR. The doc says he predicts I’ll be clear, but I bet he tells all the patients that…
I wouldn’t say the parrot is so wise, but..eerily human sometimes. He gets very agitated and sometimes wolf whistles when I pass his cage unclothed on my way to the shower (not sauntering sexily, I can assure you). No one has ever taught him that whistle. And I’ve been trying to get him to say “I love you” for the last 8 years (he knows how to say it—he said it for a couple of years), and he just responds with a baleful stare. I ask you—does this remind you of anyone you know?
Anyway, thank you all again, more than words can say. It’s a gorgeous spring day in FL and not one thing has gone wrong, so it can’t be too weird to feel like a 10. I’m off to take my shot…the number will probably be down by tomorrow, but that’s ok too. If I start sounding like Ned Flanders on the Simpsons, you will tell me, right? Badiddly bye now…