The moral of this story.... Get a good HV specialist.
OK, I am no expert on HVC and I recently found out I put my trust in the wrong doctor. He is a GI man, not a specialist in HV but claimed to have treated hundreds and was highly recommended. His practice is very successful in the normal GI field but he failed in my case.
So, I get HVC geno-2a w\750k VL at the time of discovery. He says no biopsy needed and puts me on 24 weeks of peg & Reba. Week 10 no sign, week 24 no sign and it came back with a 460k or so VL after 6 months post TX. He sends me to a great HV Dr. That is all on the not so good Dr.
Now the good Dr. I go to Dr. Gitlin and immediately get a biopsy and all associated blood work.
I go in for the results of the BX. I am a bit on the fatty side with Grade 1 and Stage 2-3. VL is 1.14 Million. All other blood work is OK or normal for what I have.
Now we are not going to get Dr's to bad mouth each other but in the conversation he wondered why there was no BX data in my file. I informed him why. He (Dr. Gitlin) seemed to believe from my BX, even though I am type -2a, that I should have treated for 48 weeks. From all the type-2 relapses I read about I tend to agree.
The other Dr also failed in seeing that my nupregen (spelling?) was too low. I found this out when I showed him scars of the five leg sores that would not heal during TX. These were quarter size ring worm looking things that did not respond to anything.
So now, I am to take 6 more months break and will TX again for a 48 weeks. What I TX with will depend on what happens in the medical field in between then.
From what I read and in his comments, if I do not treat, in 10 years I would be dead or near so from cirrhosis.
I've always been a strong advocate for seeing a liver specialist (hepatologist) if possible over a GI. In most cases, they simply have more experience treating HCV and are more up to date on the current protocols.
That said, I really don't see any glaring mistakes your previous GI made. While frequently done, biopsies are not standard for genotype 2's. Same with 24 weeks, that is standard protocol. As for a stage 2-3 being dead in ten years from cirrhosis, while I don't have a crystal ball, this seems like a gross overstatement. As to your Neupogen dose being to low, did the doctor really think a higher dose would have prevented your leg scars? My doctor -- a hepatologist -- rarely prescribes Neupogen because studies suggest that low WBC's dont correletate to Interferon-induced infections.
Is this simply a case of one doc, one-upping another? Have no idea. The only reason I mention all this is because I don't think you should feel too bad having invested the time you did with your first doctor. In my very lay opinion, he seemed to have proceeded in the same way many hepatologists would have.
Moving forward, 48 weeks does seem a good idea since you relapsed. If you have time, you might want to visit the Clinical Care Options web site and watch the video "Doc Eye for the Hep Guy". Lots of good concepts for those re-treating and maybe some ideas to bring up with your new doctor. Free registration is required.
No, it is not a one up thing. I was trying to read between the lines. Dr. Gitlin for sure was not beating on him.
You are right about the 24 week being the norm. Perhaps the 48 week re-TX is the norm.
As for Dr. Gitlin, I know I am in good hands now. See below his credentials.
Thanks for the comments and link.
Norman Gitlin, M.D.
Fellow, American College of Physicians
Fellow, American College of Gastroenterology
Fellow, Royal College of Physicians - Edinburgh
Fellow, Royal College of Physicians - London
Dr. Gitlin received his bachelors and medical degrees from the University of Cape Town and continued his medical studies in both London and Edinburgh. While studying in England, Dr. Gitlin was a student of world-renowned hepatologist Dame Professor Sheila Sherlock. After arriving in the United States in 1983, he held appointments at the University of California in San Francisco for six years. He was named chief of hepatology and professor of medicine at Emory University School of Medicine in 1993. Dr. Gitlin joined Atlanta Gastroenterology Associates as a hepatology consultant in 1999.
Dr. Gitlin has authored two textbooks on liver disease and written 75 original papers on the subject. He is the editor of "Clinics In Liver Disease of North America," and serves on the editorial boards of several national journals and medical societies. He is actively involved in a number of research studies, including the treatment of hepatitis C and B and non-alcoholic steatohepatitis.
He is a member of the American Association of the Study of the Liver, the American College of Gastroenterology, the American Federation for Clinical Research, the American Gastroenterology Association, the American Medical Association, the British Medical Association, the Georgia Medical Association and the Georgia Gastroenterology Society.
Dr. Gitlin specializes in liver diseases, including transplantation and is an authority on drug-induced liver disease and herbal/traditional therapies used in the treatment of liver disease. He sees patients at the Emory Crawford Long.
First I want to say, I am so sorry you relapsed! You were undetectable while on the treatment but the virus returned when treatment ended, so you relapsed. A nonresponder or slow responder can't reach UND during treatment.
I relapsed also, and I know how upsetting it is. It's easy to Monday morning quarterback your treatment, I know. I know I did a lot of that. I seemed to go through the stages different stages, disbelief, anger,sadness and fear, then I picked up my sword and am back in the fight.
I am a geno. 3, so I, like you, did 24 weeks the first round. Your doctor doesn't have a crystal ball ( I wish docs did!) and he treated you the recommended way as did mine. I, like you, was UND for most of the treatment. We are just in that unlucky 20-30% who relapse with our genotype. Our doctors then go to step two, or round two and factor in the previous relapse and recommend the longer tx. I was upset at my doctor at first too, but I was just plain upset that I had relapsed and he was the easy target! I think we are just mad at the medical community at large because they don't have a better treatment for us. In my case my doc also increased the dosages for the second round, is your doctor planning on increasing dosages? It is a guessing game, there is no way yet for the doctor or us to know if you will relapse or not. If he treated you for 48 weeks the first time and you had cleared it at 24 weeks then you would have treated 6 months too long.
It is frustrating but you did respond to treatment and that is a good thing. Also treatment itself can help to heal your liver damage, if you have any, another good thing. Your body got a respite rom the virus for 24 weeks, another positive.
I know it is discouraging and it makes you really PO'ed to relapse. It is so much work only to have to do it again but this is a tough opponent, sometimes it takes another battle.
Try to stay positive, hang in there!
As for the doc giving the 10 years. As you can see by who he is, I have to take him seriously. I will get some clarification the next time I see him. In 6 months that is. I go in the get started again and will ask. Perhaps he meant I'll have cerohsiss in 10.
try and not get too worried. many had this for 35-40 years and are still healthy.at stage 1-2/3 you are in good shape. as mentioned 24 weeks with no bx is very standard for geno 2's. if you are waiting for 6 months you may as well wait 1 year and see how vx950 data looks. it takes time to see if svr is achieved but all signs look good. 48 weeks is a long time if not called for.
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