I was diagnosed with Hepatitis C in March 2011 genotype 1a. I was 22 and treatment naive when I began triple therapy on Sept 20, 2011. At the start of treatment I weighed 136 lbs. The treatment consisted of Pegasys (peginterferon alfa-2a) 180 MCG, Ribasphere Ribvirian 1200mg and telaprevir.
At the start of treatment my hemoglobin was 17. At week 4 I became undetectable and my Hemoglobin dropped to 10. My Ribavirin dosage was reduced to 1000mg on October 28, 2011. On November 13 my hemoglobin dropped to 6.8 and I had to get a transfusion with 4 units of blood. I was also given a Neupogen shot and was discharged with a hemoglobin of 10. I continued the triple therapy treatment with no dose modifications. On December 2, 2011 my hemoglobin dropped again to 6.6. Once again I was given a transfusion this time with 3 units of blood. I was also given Procrit and Neupogen. I discontinued telprevir 10 weeks into treatment, but continued taking the same dosage of Ribavirin and Interferon. I was dischargd with a HBG of 9.9. On December 12, I had a CBC test and my hemoglobin dropped once again to 8.2. I was given a Procrit shot and Ribavirin dosage reduced to 800mg. On my next CBC test on December 18, 2011 my HBG dropped once again to 6.1 and I was given another transfusion and discharged with a HBG of 8.8. On Dec 20, 2011 my visit with the Infectious Disease treating me gave me another Procrit shot and discontinued treatment.
I completed 3 months of treatment. At the end of treatment I was still undetectable. In April 2012 I had a viral load test which came back detectable. I felt like my doctor did not do a sufficient job in managing my anemia. After reviewing the weight based guide for Ribavirin it looked like I was given a to high dosage, and after I had transfusions he did not modified the Ribavirin dosage. I had to beg him just to reduce him to 800mg which he reluctantly did.
Starting in October of 2012 I began to notice weight loss and change in my stool color in which it was white/clay colored. I also started to become itchy everywhere and my eyes became yellow. I had a LFT performed and my test were elevated.My AST 196, ALT 161, Bilirubin 3.9 I then began seeing a hepatologist. I had a Ultrasound and CT Scan done which just showed enlarged liver and spleen. The hepatologist were confused and thought something else was going on besides the Hep C. Prior to starting treatment I had a liver biopsy done in August 2011. The pathology report stated Chronic Hep C, Grade 1 Inflammation, Stage 0 Fibrosis. My hepatologist wanted me to get the slides to have their pathologist review the slides. After their pathologist reviewed it, their pathology report stated "portal and periportal fibrosis noted, Chronic Hepatitis C and Autoimmune hepatitis, grade 2 of 4 stage 2 of 4". My blood work for autoimmune only the ANA came back positive. I was shocked at how the different the two pathologist report were. My hepatologist was not sure if I had autoimmune hepatitis and order another biopsy. The pathology report for the second biopsy did not detect any autoimmune features. "Chronic Hep C with moderate activity grade 3 of 4 and bridging fibrous septa stage 2-3 of 4." My hepatologist seems a bit confused on whether I have a autoimmune or if it just the hep c. My hepatologist order more blood work.
My hepatologist seems to now believe it is just the Hep C that is progressing very rapidly. She suggested treating my Hep C again but this time with Boceprevir. I am worried about starting treatment again with Boceprevir due to the anemia side effects I had. I am also worried of not responding to treatment because I was already on Telaprevir. I do know what I should do, with the symptoms I am now having and my liver getting damage I do not know if I would be able to wait for the new medications to be approved. Also I do not think I would be eligible to do any trials because of the possibility of autoimmune hepatitis. I could not find much information on people who were treated with both Telaprevir and Boceprevir. If anyone can offer any advise, suggestions I would greatly appreciate it.
"My hepatologist was not sure if I had autoimmune hepatitis and order another biopsy. The pathology report for the second biopsy did not detect any autoimmune features. My hepatologist seems a bit confused on whether I have a autoimmune or if it just the hep c. My hepatologist order more blood work. "
That is a whole different issue so first you know to see a hepatologist who is familiar with both autoimmune and HCV hepatitis. There is nothing complicated about diagnosing autoimmune hepatitis is most cases. So the first thing you need to know is do you have autoimmune hepatitis or not?
I afraid we can't comment of autoimmune hepatitis.
So who is this hepatologist?
At what liver or transplant center do they work?
"She suggested treating my Hep C again but this time with Boceprevir. "
How can they treat you with another PI Victrelis after failing Incivek only 9 months ago. You have been tested for resistance?
"stage 2-3 of 4" It is rare that such a young person would have this much liver damage from only hep C. The whole thing doesn't add up to me.
Chronic Autoimmune Hepatitis
Causes And Pathogenesis
As far as management of anaemia with Telaprevir Riba dose reduction is usually the first line of intervention. Procrit and/or transfusions are not uncommon either. I am not sure why your doctor did not dose reduce since studies show it would not have impaired your chance for SVR.
Rather than recreate your first treatment scenario and the clinical guidelines here is a chart that might give you an idea. It is from the Incivek web site:
***The presence of ANA could be indicative of many conditions***
I'm not sure where the possibility of autoimmune hepatitis came from to the exclusion of other autoimmune conditions - plus, you do state, "The pathology report for the second biopsy did not detect any autoimmune features. "Chronic Hep C with moderate activity ..."
Switching PIs mid-treatment:
There is little clinical evidence for switching a patient with chronic hepatitis C infection to the other protease inhibitor midway through completion of the original PR-protease inhibitor therapy. In fact I only found one study. This one shows a person switched from Telaprevir to Boceprevir after eight days of being on Telaprevir:
I could only see this much of the article:
"After 8 days of T/P/R, the patient developed a rash over his legs and abdomen (Figure 1). His viral load decreased to 66 International Units/mL"
The occurrence of rapid progression of liver disease following INF treatment appears to be too common. Been there, done that. So have a lot of folks on this board, some of whom seem to acknowledge it, some of whom don't.
It is a function of human nature that very few treating doctors will attribute rapid progression of liver disease following INF treatment to the INF treatment.
My apologies, also, young man for not first saying that I am so sorry to hear that this has happened to you.
It is my belief that the body's immune system often goes haywire in the few months after cessation of therapy, based on my own experience and observations on this board. This is not explained to patients and is probably not appreciated by most treating physicians.
If you run the same course of many, it will run crazy for a year or so and then start calming down. Watch your thyroid. Watch for other auto-immune issues.
My only suggestion would be to undertake an anti-inflammatory diet in order to try and calm everything down. Keep junk food, chemical, preservatives, etc out of your body. It is probably a serious matter and is something you should really pursue hard if you can. Just my opinion, but one that I believe absolutely.
I think it would be very dangerous for you to treat again.
I'm so sorry to hear that you are having so much trouble so early in the course of the infection. I completely agree that you should try to get another opinion on whether or not you have an autoimmune hepatitis, and on those biopsy results too. That is really weird that the same slides would be read so very differently. If the autoimmune hepatitis diagnosis was based purely on an elevated ANA, then I would tend to give more credence to the other doctor's view. HCV can cause autoimmune problems itself, and might be causing elevated ANA without necessarily having an autoimmune hepatitis. I was first infected (we think) in 1984 and was diagnosed in 1986 after developing severe autoimmune arthritis. I've had elevated ANA levels ever since, but have never had any other signs of autoimmune problems in my liver. The triple tx drugs can exacerbate autoimmune problems, so if you really had an autoimmune hepatitis it would be something that should be seriously weighed before taking those drugs. On the other hand, if your Hepatitis C is the cause of autoimmune problems then successful tx could really help those problems a lot. You need to have doctors who can figure this all out before doing any additional treatments. Given your youth, I would also hope you could hold off on further tx until the next generation of drugs are available. Studies are in progress and we all expect an interferon-free treatment to be on the market in 2014. In the meantime try to find a really top-notch hepatologist for another opinion (the best ones are often associated with major liver transplant centers). Best wishes!
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