I know Triple is a real game changer to how treatment was on just the Peg & Riba but wow did your Hgb drop. Since it dropped this soon in treatment you might want to talk to your doctor the next time you see him and work out some kind of treatment strategy for managing your side effects. Or rather, ask him what his long-term plan would be to manage your Hgb throughout the duration of treatment.
That way you won't be freaked if you you are possibly on a reduced Riba dose throughout treatment and you will find out his position about Procrit.
OrphanedHawk has asking how the doctor manages sides and rescue meds as one the questions you should ask prior to treatment. I did not do that this time around and as I think about it I feel fortunate my doctor strives to keep me on the full dose of Riba. Yes there are studies that indicate Riba dose reduction does not impact SVR but I would not want to be on a reduced dose for a prolonged period. Especially not until week 24.
I know that is fear talking as a Prior partial responder though :)
Here is to hoping and praying UND for you by week 4!
Hi PJ....I typed a response and don't know where in the hell it went so here we go again.
First of all, are you really confident in your physician in treating you? I am just shocked by the drastic reduction in your Riba! I mean 1200 to 600 to 300 (just for today)? I am totally confused here because I don't understand his thought process whatsoever. Why didn't he call the pharmacy and have your correct dosage overnighted to you? Is he lazy and can't pick up the phone?
Also you said you HGB was 10.3. Are you having difficulty breathing? Is the low HGB too much for you? The reason I am asking is because I thought protocol on Riba was to reduce if HGB is <10. So I am guessing you feel like sh$& ? You also said your RBC was 3.45 that is low but I wouldn't think much of a concern. I just had mine checked about 3 hrs ago and it was 3.32.
Since you relapsed last time I would be raising all kinds of hell about reducing the Riba. This is JMHO....but if this was my second time around I would be in his office asking a million questions of WHY?
I hope everything works out well for you!
Seems kinda drastic to me as one wants to be UND at week 4. Alot depends on it, like doing 24 more weeks of treatment if not.
Reducing all the way from 1200 to 400 at week 2 with an HGB of 10.3, one sure hopes he's guessing right. But then again its not your doctor who is treating........... Wishing you the best
i wish i was 10hgb at day 16.......week 4 is a big one to get through
Treatment Outcome T12/PR
N = 363
n/N (%) Pbo/PR48
N = 361
Overall SVR 79% (285/363)
eRVR 58% (212/363) 8% (29/361)
SVR in eRVR subjects 92% (195/212) 93% (27/29)
No eRVR 42% (151/363) 92% (332/361)
SVR in no eRVR subjects
60% (90/151) 42% (139/332)
Outcome for Subjects without SVR
On-treatment virologic failurea 7% (26/363) 29% (105/361)
Relapseb 4% (11/298) 24% (53/220)
Otherc 11% (41/363) 10% (37/361)
As one can see response was... eRVR 58% (212/363) 8% (29/361).
So a doctor is " guessing, hoping" your und at week 2 yet only 58% was at week 4............
A Riba reduction of 1200 mg to 400 mg would scare me to death, especially at day 16. An incremental reduction from 1200 mg to 1000 mg and starting Procrit would be my option if it was me. I would even take a blood transfusion if necessary. My Hgb dropped to 10.2 and I never reduced anything.
I know this is early in your treatment (day 16) and it appears the doctor is nervous about the Hgb drop, but I still think it is a drastic reduction. He does not even know if you are UND yet. Even being UND does not mean the virus is gone. It simply means the test cannot count find it.
Is this doctor a Hepatologist or a GI or a Primary Care Physician. If it was me, I would discuss this with the doc and if he insists on only 400 mg a day, I would find a Hepatologist who tries not to reduce Riba anymore than absolutely necessary and who uses a combination of treatment (including Procrit and blood transfusions) so one can stay on an adequate dose of Riba. (Actually, that is what I did when my Hgb started to get near 10.
It is true that they concluded that Riba reduction did not impact SVR, but they were not specific about how much it can be reduced, at what point in treatment it can be reduced, and how long it can stay reduced.
I do have fatigue, dizziness and shortness of breadth. I'm down & resting. He called Curascript right away, but they didn't mail it today. I was pissed off & calling my insurance to see why I must deal with them instead of the company that my doctor wanted to use. He usually deals with Greater Sacramento Pharmacy and swears by them. Thanks for everyone's comments. I'll talk to my doc more about this. He is an internist at UCSD. This department treats all Hep C patients. He completed a clinical fellowship in Addiction Medicine and Viral Hepatitis C at Weill Medical College of Cornell University. His clinical research involves Hepatitis C in opiate dependent patients. I did talk to him about protocol of anemia and he told me upfront the first line is reduction of Riba. He wants me fully on incivek for full 12 wks. Thanks for your comments. I'll talk to him more. Appreciate your help.
I have to agree with most of the posters in thinking your doctor got a little radical on the riba reduction. What was your starting hgb anyway? A 2 point drop can be pretty devastating and you may have had a 4 point drop. The doctor does have you on weekly CBCs, right? You need to know when you can increase your riba.
My insurance company approved the procrit okay (with a little glitch) and later they would not approve it until I had reduced riba. But as soon as the doc told them I reduced they approved without time to have any results from the reduction. Insurance companies are way behind on this.
I hope you are able to increase the riba soon.
i see you are a quilter, me too. i put a couple of pics of my quilts in my photos. I did not have energy to quilt when I treated.
I find it hard to understand why your doctor would not use procrit unless you have some other medical issues going on.
The reason we suggest hepatologists is as liver specialists they have more training specific to liver disease.
If you are in the Sacramento area you could see one of the hepatologists who do outreach from CPMC. My hepatologist who I adore works in Sac though I'm not sure which days.
You could see him for a consult and continue with your current doctor if you choose.
If you want to talk to me more about him, send me a pm. I have his email.
Coincidentally, I began seeing him when my GI wanted to pull me off treatment. One of the members here recommended him. I was able to continue without missing one shot.
Oops, I got confused by the Sacramento Pharmacy reference. I see you're in So Cal.
Who you really should see for a consult is Dr. Gish, a very renown wonderful hepatologist there at UCSD. He's one of the best in the nation.
In two of the clinical trials they had arms that contained no Riba, just Incivek and Interferon. The arms without Riba had significantly lower SVR rates.
Reducing Riba may be the initial step when the Hgb drops below 10, but I don't think I have ever heard of going from 1200 mg to 400 mg in one fell swoop at day 15. And most people on the forum who had Hgb drops reduced Riba some and used Procrit. Many also had transfusions.
I don't know if you have ever had anemia before. I had hemolytic anemia when I had systemic vasculitis. My Hgb was 9. I was short of breath, severely fatigued, white as a sheet, light headed. I could walk only a few steps at a time and then I had to rest. I also had a faster heart rate. I had episodes where I felt like I would pass out and collapse and had to lie down immediately, even when I was driving, I had to pull over and rest. (I only drove to the doctor's office.) I was so tired I did not want anyone to come over or to call me. It was a major effort to keep my eyes open or to talk.
Last fall when my hemoglobin started to drop, I was severely fatigued, short of breath, could feel every heartbeat (and the heart rate was about 110 all of the time), had runs of fast heart beats of 180 per minute which lasted several minutes, felt like I would pass out, was light headed, had reeling dizzy spells, had to hang onto the walls when I walked, felt weak. I am only telling you this to let you know that anemia causes these symptoms. Last fall I tried to compensate some by walking slowly and not much, using elevators, getting up very slowly, resting as needed, hanging onto walls, not overdoing, keeping hydrated.
Some of the symptoms may not be due to anemia. Or at least, the other drugs are compounding the symptoms. I was no longer anemic yet I was still extremely fatigued, light headed at times, felt like I would faint or collapse if I did not sit or lie down right away, felt weak, had no energy. Those things were at least partially caused just by ingesting the drugs, even when I was not anemic.
Here is the data from the studies each containing an arm without Ribavirin:
"Ribavirin: A Critical Component in HCV Treatment"
"Early studies of protease inhibitors include studies in which RBV was not coadministered largely because RBV is known to caused hemolytic anemia and gastrointestinal problems. However, when RBV was excluded from these regimens, SVR rates dropped and resistance arose (Figure 1).[8-20] "
"For example, in the phase II PROVE 2 study, treatment-naive patients chronically infected with genotype 1 HCV were randomly assigned to one of 4 treatment arms:
4. Standard pegIFN/RBV for 48 weeks
Comparing the T12PR12 and T12P12 arms that were identical apart from the inclusion or exclusion of RBV, SVR rates were 60% in the arm with RBV and 36% in the arm without RBV. Rates of virologic breakthrough were 1% and 24%, respectively. Similarly, in PROVE 3, which was conducted in patients who had failed previous pegIFN/RBV treatment, SVR rates were 2 times lower for patients not receiving RBV in their telaprevir-based regimen: 24% in the T24P24 arm vs 53% in the T24PR48 arm (Capsule Summary). Similarly, relapse rates were 53% and 13%, respectively. Finally, in the SPRINT-1 study of boceprevir for genotype 1, treatment-naive patients, those receiving low-dose RBV achieved an SVR rate of only 36% vs 50% with standard weight-based RBV dosing, each combined with boceprevir and pegIFN (Capsule Summary). Thus, RBV remains a critical component of these new antiviral regimens."
Jeepers, I don't understand all that, does anyone else?
Does anybody know why, when the hemoglobin drops, the docs don't just put folks on the new iron supplements like 21/7 by VitaMed which do not have the terrible side effects that most iron supplements do? I know that with us, it's dangerous for iron to build up in us but I asked a doctor and was told it takes a LONG time for that to happen and it doesn't hurt anyone to take the iron supplement for 12 or 24 weeks. The buildup doesn't happen that quickly and once we stop the treatment and stop the iron supplements it goes back to normal.
"Does anybody know why, when the hemoglobin drops, the docs don't just put folks on the new iron supplements "
When we are on treatment (Interferon, Ribavirin, and a Protease Inhibitor) we do not become anemic because we are deficient in iron (Iron Deficiency Anemia). Instead we become anemic because the drugs are causing Hemolytic Anemia.
"Causes of Anemia Associated with HCV Therapy"
"Anemia that develops in a patient receiving HCV therapy often has multiple potential contributing factors, including ribavirin (Rebetol, Copegus), interferon or peginterferon, underlying liver disease caused by HCV infection, and co-morbid conditions, such as HIV infection or chronic renal failure. The anemia associated with ribavirin most often occurs as a dose-dependent hemolytic anemia, typically developing within the first 4 weeks of therapy. With use of higher doses of ribavirin (1000-1200 mg/d), hemoglobin levels frequently decline by 2-3 g/dL, as seen in this case. In addition to causing hemolysis, ribavirin can also down-regulate the number of erythropoietin receptors. Interferon can also contribute to the development of anemia by suppressing bone marrow production of erythrocytes, but this process is generally slower and may account for the continued decline in hemoglobin concentration during the second and third months of treatment, as seen in this case. Finally, patients developing anemia during HCV therapy often have inappropriately poor serum erythropoietin responses, probably related to their underlying liver disease. Because of the mixed nature of HCV treatment-associated anemia, it often is not possible to pinpoint one particular drug as the primary cause of the anemia. "
"Jeepers, I don't understand all that, does anyone else? "
Let me try to explain Can-do's data:
Treatment Outcome for Teleprvir 12 (weeks) plus Peg (Inf) and Riba
Number in study: 363
Overall SVR 79% (285/363)
Percentage of people in the study who attained: eRVR (early rapid viral response) was 58% (212/363) (eRVR is UND at week 4)
SVR rate in the 58 % of people who attained eRVR was 92%
Percentage of people in the study who did not attain eRVR: 42% (151/363)
SVR rate in in the 42 % of people who did not attain eRVR: 60% (90/151)
Outcome for Subjects without SVR
On-treatment virologic failurea 7% (26/363)
Relapseb 4% (11/298)
Otherc 11% (41/363)
Hope that helps.
Here is the link to that data:
Great article explaining that treatment, thank you.
I do realize that and again, would it be a problem for those on short therapies, let's say the 12 or 24 weeks ones, just to use the iron supplement that I mentioned (it doesn't cause diahrrea or stomach pain) just to keep that level up so the drug makers doing the study do not insist on lowering the riba? You see what i mean? Just curious, would it hurt anything?
If a person is going to use iron supplements, that person needs to ask the Hepatologist first. Many people with liver problems already have problems with iron metabolism and iron storage so a person does not want to add to an already existing problem.
Adding iron may help if the person is suffering from Iron Deficiency Anemia prior to treatment .If a person can correct Iron Deficiency Anemia prior to Tx, then the Iron Def. Anemia would not compound the Hemolytic Anemia caused by the drugs.
However, adding iron is not going to alter the course of Hemolytic anemia because the Hemolytic Anemia is not caused by iron deficiency. It is caused by the Hep C Tx drugs(Ribavirin) which 1) causes the destruction of red blood cells (hemolysis), 2) can down-regulate the number of erythropoietin receptors. Interferon can also contribute to the development of anemia by suppressing bone marrow production of erythrocytes, Finally, patients developing anemia during HCV therapy often have inappropriately poor serum erythropoietin responses, probably related to their underlying liver disease.
I think you should read this article about Ribavirin reduction:
Your viral load is responding to treatment, so a reduction on Ribavirin should not be so bad. I also think it was a VERY BIG reduction, but it is better than having to suspend treatment for blood issues. I am not a doctor, and I don´t have all the information on your medical file, so I don´t know why he lower your dose so much. I think you should do what your doctor tells you to, but ask him about other options so you can resume the recommended ribavirin dose as soon as possible.
you don't get what I am saying, but I'll just let it be.
thank you for your advice. I'm waiting for my viral load results for week 2 so hoping for the best. Should have them Monday or Tuesday.
Thanks for the web link.