Newly Diagnosed

[klonny55]

Hello,

I am a 58 year old male and was just yesterday diagnosed with HCV. My GP is saying it's OK to wait to do anything since she says all my blood work is normal, platelets, albumin, bilarubin, etc. My viral load is low at 44,000. I have begun the process of making an appointment with a specialist despite her reassurances based on what I have read here and elsewhere. I worked as an EMT in the 80's and assume that I was infected around this time. I also was a bottle a day wine drinker for many years. I have stopped that completely as soon I was told I had elevated enzymes (ALT 245), about two weeks ago. My GP says that the ALT is most likely from the alcohol not the HCV based on my other blood work results. I feel great, especially after quitting the wine and can go for a 50mi bike ride at 16 mph average 5 days a week with no fatigue other that what one might expect from strenuous exercise. I have not had the genome testing yet, I assume that will happen when I see the specialist.

Anyway, I'm sure this is a story that is told here many times and I'm not sure I really have a specific question. I would however appreciate any insights anyone might have to offer.

[hep_mom]

Hi klonny,

Welcome to the forums.

Sorry to hear about your diagnosis. You can beat this.

You are off to good start in researching and getting another opinion. Hopefully your stats are good. The current treatments are tough but there are some new ones coming soon if you can hold out.

Let us know how the second opinion goes!

[karenhoyt]

Welcome to the forum! It's great that you got diagnosed before any liver damage had started.
I'm glad to see that you're being physically active. 50 miles? haha! That is awesome. You're in good shape...
Keep us posted about how it goes with the specialist.
Karen:)

[klonny55]

Thanks for the kind words. I just got back from a 40 mile bike ride. It really helps to get me focused and centered. I have made the appointment in two weeks with a Gastroenterologist in Hanover, NH at the Dartmouth Hitchcock Medical Center which is a top notch facility. Until then I am going to focus on having good days and sleep-full nights. I really appreciate all the positive energy here and will report back with any info or questions. I hope the results come back with little or no damage but I am worried because of my past alcohol consumption. 

[jberlin]

First of all, sorry!  I am a 57 YO male and contracted Hep C in 1976 in surgery even though I was not diagnosed until 10 years' later with non-type A / non-type B Hep...  First of all your options are much better now than they were 2 years' ago.  I was treated twice, dual therapy 2004, then I relapsed in 2005 (6 month incubation period), and now just completed Incivek triple therapy and await my fate next month.  In late 2014, early 2015 non-interferon treatments should be available, and perhaps treatments of 12 weeks instead of the current 24 or 48.  Now the advice to take with a grain of salt:  Get a liver biopsy and get it read by a hepatologist.  Hepatitis is typically very slow to progress, and if your biopsy is ok, wait it out, if not get on Incivek now.  (What genotype HCV?)  I decided in May 2011 when the triple therapies were released to wait until my kids' graduation, and I started May 2012 - My liver was OK, but the promise of newer drugs was too distant for me then and I did not want to wait until after I was 60 to face a very tough treatment.  Lots to consider, but the promise of easier treatment is much more real now - so find out truly how your liver is - then decide.  One other thing - the difference in a GI and a GI that specializes in hepatology is HUGE - find an expert.  I talked to doctors at Duke and at Lifelink, and when they all agreed I took the next step.  It's your liver!  Good luck and keep us informed!

[klonny55]

Thanks My ALT/AST was 235/111 when my blood was drawn. I probably drank a little over a bottle of wine the night before which was fairly typical for me. When I got the results of my blood work I stopped completely, even before I had any idea about having HCV. My GP was not going to do the hep tests saying that the results were probably about drinking.I can see now that the enzyme levels are more in line with that of a viral infection. I asked to get the hep tests done which came back positive with a viral load of 44,000. This was all about two weeks ago. I have not had the genotype test yet.

I'm trying very hard not to obsess and spend all my time in front of the computer googling about this. My platelets are 195 and albumin 4.5, that's a good sign good right? I'm not sure about the exact bilirubin but was told it was normal. I'm riding my bike 200 miles a week, did a lot of cross country skiing this past winter and have always been fit, if a little heavier (15-20lbs) that I should be. I'm already dropping lbs from not drinking.

I'm self employed as a massage therapist and B&B owner, have good insurance and a wonderful partner who has been very supportive.

OK, enough rambling, thanks everybody, I'll be back when I have an update or
question.

And yes I have an appointment in two weeks with a GI specializing in HCV at the Dartmouth Hitchcock Medical Center which is a Dartmouth College/Mayo Clinic facility.

Peace!

[klonny55]

I have my first appointment with the hepatologist today. I found out I am genotype 2b so am hoping I can wait for all oral sofosbuvir/ribavarin combo which many think will be available in 6 months or so for gen 2 and 3. I'll report back with what the doc has to say.

Thanks!

[jberlin]

Man, you are doing all the right things!  If your liver is in decent shape you absolutely should wait 12-24 months and see if you have better, easier, shorter treatment options - which my bet is you will.  Do keep us informed and good luck!

[klonny55]

I had my appointment on 5/2 The hepatolgist says that they are not treating genotype 2s until the new drugs are out, period. I have a biopsy scheduled for June 5. If I am a stage 2 or less I will go along with their advice, if 3 or more I will get a second opinion. I am hopeful that I am not too bad off. I did drink too much the last 10 years (about a bottle of wine a day) but also have always been in good shape. My cholesterol and triglycerides are very good, no sign of diabetes, platelets, bilarubin, albumin, globulins, etc all well within normal range. Waiting is the hardest part but sofosbuvir has been fast tracked and I'm keeping my fingers crossed I'm not a stage 4 and can get on treatment asap. The hepatologist is saying they will not treat anyone until 6 months post drinking which is the end of September '13. Somofosbuvir could be available as soon as October Some are saying Sofosbuvir could be available as soon as October '13....time will tell!

[jberlin]

Hmm, well I am not a MD, so I hate to second guess - but I agree with you - if your liver is in a bad way I would get treatment soonest and not wait.  And that stuff about no drinks for six months seems like pure BS to me, more likely designed to see if you are committed to treatment rather than anything that effects treatment.  Both times I started treatment I socially drank almost to the 'day of' and was never once asked by several hepatologists.  I was asked not to drink during or immediately after treatment in order to let the liver have as much strength as possible.  The very good video series by Devon Nicholson the wrestler is about his treatment and I am sure it is Geno 2.     http://www.youtube.com/channel/UC611FnbjRgbpBA8tg22eWGw?feature=
As always, wishing you luck and do keep us informed.

[klonny55]

Hello,

I am posting my latest info as much to organize my own thoughts in a narrative as anything else.   

HCV+ probably infected sometime in the 80's when I was working in EMS
Biopsy scheduled for June 5, 2013
Genotype 2b
AST 59
ALT 141
Viral Load 44,000
Platelets 198
INR 1.1 (lab range 0.9-1-1)
Prothrombrin time 14.2 sec (lab range 12.0-15.0)
Albumin 4.4
Globulin 2.9
Alkaline Phosphatase 36
Bilarubin 0.4 (0.1 direct 0.3 indirect)
WBC 6.1
RBC 4.89
Glucose 104 (non-fasting)
Total Cholesterol 192
HDL 70
LDL 106
Triglycerides 78
HIV-
IL28b result is not in yet.

I have had my first consult with the hepatologist at Dartmouth Hitchcock medical center in Hanover, NH (a Dartmouth College/Mayo Clinic facility) May 2, 2013 My take away from this meeting:

*They see about 2 new HCV patients a day.
*I was told that they are not treating any genotype 2s until non-interferon treatment is available. They say this will happen within the next 12 months.
*No treatment until 6 months after stopping drinking (in my case this would be the end of September '13)
*Cirrhosis cannot be ruled out in my case but there is no indication of it from the above numbers. Duration of infection and drinking history (moderate or more the last 10 years) are the factors that suggest a risk of cirrhosis.
*I need to lose weight, 20 lbs or so but am relatively fit. My BMI is 34 but I have always had a high BMI I was a professional mountain biker in the late 80's to mid 90's and BMI then was 30. I still ride my road bike 125-180 miles a week in season and cross country ski in the winter.

So these are the things I am wondering about. if anyone has any thoughts that would  be wonderful but I am putting them down here as much to organize my own thoughts as anything else.

How much stock should I put in the scores of Fib-4 (1.46), APRI (0.85), HALT-C Formula for Predicting Cirrhosis? (27%) None of these calculations would indicate a definite diagnosis for cirrhosis.

Does anything else above stand out one way or another? My platelets are a bit low normal and my INR is at he top end of normal. Do these values tend to be dynamic or change slowly?

Does what the Hep doc is saying about not treating gen 2s make sense?

Does what the Hep doc is saying about not treating until 6 post post drinking make sense? Is this about treatment efficacy or concerns about treatment adherence?

I take fish oil supplements, could this affect my INR?

I am thinking if my biopsy indicates F2 fibrosis or less I will take their advice and wait. F3 or more I will get a second opinion.

Sorry if I;m repeating anything from my earlier posts just wanted to get this all down in one place. Thanks, best to all!

[karenhoyt]

It sound like you have everything under control. Keep up the good work. Everything you can do to stay in top physical form will help during and after treatment. I'm curious about the biopsy also. It's a tough waiting game for the FDA approval.
Also, your numbers look amazing good. Platelets are in great shape. INR has to do with clotting time. If your liver is damaged, it will affect your RBC, platelets, and clotting factors.
Ask your doctor about any and all supplements or vitamins. I even take the label in to show my dr just to be safe.
I'll bet on the fact that you don't have a lot of liver damage. It is good to have a record and writing always helps. My best to you, Karen:)