Hep C Discussion Forum

kiwi · Senior Member

RE: Treatment progress

news · Guru

My insurance woud not pay for procrit until the hematocrit got below 30. At one set of labs I was at 30.4, and I had begun to to feel a little weak (plus I was still in my eighth week of Incivek). At the next labs, two weeks later, I was at 26.4 and she put me on procrit and cut the riba dose in half that day. The specialty pharmacy delivered the 4 little 1ml. vials in a refrigerated shipping case the next day, and I started it on her command a couple days later. At the next labs I was back to 32.5 and she asked me to quit the procrit and keep the riba dose at 600mg per day.

Alan

news · Guru

An interesting tale, from a guy about my age. I did the Incivek triple therapy, which starts with all three on the first day, and lasts for twelve weeks, with twelve more of just riba and pegasys. At four weeks I was still not undetectable, but close. At eight weeks and twelve weeks I was UND. But they added an additional twelve weeks of riba and pegasys to the end of my 24-week program, for a total of 36 weeks. I am in week 17 now, and feeling good. The horrors of Incivek are already a fading memory. But I remember enough to know I don't want to do anything like that again.

I have fought with low red cells (my NP prefers the name hematocrit) from about week 10 until recently. I did Procrit for four weeks, and the Ribavirin dose was halved. I now have plenty of energy and generally feel good. Slight riba rash at times, like small patches of chicken pox. Easy to deal with using OTC hydrocortisone. I am back in the gym, trying to train for a long distance bike tour in early June. I will still be on Pegasys/Riba at the time of the ride. So a 100-mile day may not happen. My grandson has already said it will be just fine if I have to pull over early. But I'm going to try.

Good to see you in here. Keep us posted as you work through this experience.

Alan

Isiscat2011 · Guru

Hi Mark: Wow, it sounds like you are doing quite well and proving to us all that age doesn't predict outcomes. As a person of mature age (don't you love that euphemism) myself, I like this very much. Way to go.

I am starting to think that the blood "rescue" drugs are almost a necessity when people encounter the serious blood problems. And the general rule, that 80% adherence to drug dosages is required, seems likely to be gaining an exception with the triple tx.

When the pega/riba combo was the SOC the 80% adherence was definitely the rule, but it is beginning to look like the protease inhibitors are changing that, particularly once one has attained UND. I recently read a study in which the authors concluded that 60% compliance of the riba should be fine. This is certainly promising and I sure hope it pans out.

Hi Phil: The hgb won't raise any red flags for your doc until it drops below 10. Around that point he will probably direct a riba reduction. My doc doesn't consider a blood transfusion until 8. He is reluctant to use growth factors (procrit)at all because of its small but potentially life threatening cardiovascular side effects. Also, procrit is not FDA approved for this tx, which means it hasn't been clinically tested. It is a judgement call docs make based on the individual situation, but to me it is looking like some people absolutely need the procrit in order to finish tx.

I have read that procrit works best when the hgb is lower (well below 10). If you give procrit to someone too soon (say at 12) a stroke is likely to ensue. Also, your interferon may be reduced b/c it can also effect the blood, and even the bone marrow.

It is quite the complex balancing act to keep the blood problems in check, but knowing that riba reductions may not effect SVRs will bring comfort to many people.

The hgb and the hct measurements are related and similar. If you want a technical definition of the difference here it is:

Hemoglobin (Hb) is the protein contained in red blood cells that is responsible for delivery of oxygen to the tissues.

The hematocrit measures the volume of red blood cells compared to the total blood volume (red blood cells and plasma).

Btw, I don't have any medical training; I am just learning as I go. confuse

-- Edited by Isiscat2011 on Tuesday 13th of March 2012 04:26:37 PM

Phil G · Senior Member

At what point did they start interceeding on the red blood counts? My last labs were Red Blood Count=3.3, Hematocrit=29.7, and Hemoglobin=10.4. Its the hemoglobin that's got me concerned as the fatigue has increased. My doctor called this a Yellow Flag, but not doing anything proactive yet. Other than that, only minor complaints in Week 15.

-- Edited by Phil G on Tuesday 13th of March 2012 02:28:07 PM

Lowrider · Member

Hi folks,

I signed up here back in September at the beginning of triple TX with Victrelis. I am 65, reasonably good health, with Genotype 1. VL 2.5 million. It has been difficult for sure but I am making my way through this. The first four weeks of treatment was Interferon and Ribavirin only. Blood test at that point showed liver counts halved but still too high. VL was cut in half also. 4 weeks later with Victrelis added to the mix my liver counts were normal and VL was undetecable. Been that way since. I am in week 21?I got the Riba rash but used cortizon cream and it all went away in a few weeks. I have Psoriasis which has been a large problem for some. I bought a used tanning bed on Craigslist and do a couple of 10 minute sessions per week and all is well. My red blood cell count suddenly crashed and the dosage of Ribavirin was dropped from 3 capsules twice a day to 3 in the AM and 2 at night along with Procrit self injections 3 times a week. Red blood cell count stared to rise (from 8.3 to 9.5) in 6 weeks so the Ribavirin dose went back to 3/3 a day. Red blood count starting going down and my white cell count fell below the danger zone. Lowered the Riba dose again and added Neupogen self injection once a week for the white blood cell problem. Got a calll from my NP last Friday who had just returned from a seminar where the red blood cell issue was discussed. He was told that lowering the Ribavirin dose down to compensate doesn't change the outcome of the Victrellis treatment. Lowering the dosage by half or more seems to be okay. Main side effects for me: Can't eat anything with fat, protien, dairy. Constant dry mouth and bad taste, taste buds are burnt out. Severe lack of energy and shortness of breath. Weakness and loss of coordination. My treatment schedule shows the whole thing will be done on July 15. I am sickly feeling but stoked.

Mark

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