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Link to Hep C Survival Guide

Dec 26, 2012 - 0 comments

Hep C survival guide

Copyman, another member of this forum, posted this link to a Hep C Survival Guide a couple of days ago.  It looks like it's very valuable information, so I am posting it in my journals for others to reference.
Thanks Copyman.

Regular marijuana use increases risk of Hep C related liver damage

Dec 19, 2012 - 8 comments

hep c


liver damage


regular marijuana use

Thank you to mikesimon for sharing this article.  I am posting it in my journal for reference.

Regular marijuana use increases risk of hepatitis C-related liver damage
Posted on August 30, 2012

Bethesda, MD (Jan. 28, 2008) – Patients with chronic hepatitis C (HCV) infection should not use marijuana (cannabis) daily, according to a study published in Clinical Gastroenterology and Hepatology, the official journal of the American Gastroenterological Association (AGA) Institute. Researchers found that HCV patients who used cannabis daily were at significantly higher risk of moderate to severe liver fibrosis, or tissue scarring. Additionally, patients with moderate to heavy alcohol use combined with regular cannabis use experienced an even greater risk of liver fibrosis. The recommendation to avoid cannabis is especially important in patients who are coinfected with HCV/HIV since the progression of fibrosis is already greater in these patients.

“Hepatitis C is a major public health concern and the number of patients developing complications of chronic disease is on the rise,” according to Norah Terrault, MD, MPH, from the University of California, San Francisco and lead investigator of the study. “It is essential that we identify risk factors that can be modified to prevent and/or lessen the progression of HCV to fibrosis, cirrhosis and even liver cancer. These complications of chronic HCV infection will significantly contribute to the overall burden of liver disease in the U.S. and will continue to increase in the next decade.”

This is the first study that evaluates the relationship between alcohol and cannabis use in patients with HCV and those coinfected with HCV/HIV. It is of great importance to disease management that physicians understand the factors influencing HCV disease severity, especially those that are potentially modifiable. The use and abuse of both alcohol and marijuana together is not an uncommon behavior. Also, individuals who are moderate and heavy users of alcohol may use cannabis as a substitute to reduce their alcohol intake, especially after receiving a diagnosis like HCV, which affects their liver.

Researchers found a significant association between daily versus non-daily cannabis use and moderate to severe fibrosis when reviewing this factor alone. Other factors contributing to increased fibrosis included age at enrollment, lifetime duration of alcohol use, lifetime duration of moderate to heavy alcohol use and necroinflammatory score (stage of fibrosis). In reviewing combined factors, there was a strong (nearly 7-fold higher risk) and independent relationship between daily cannabis use and moderate to severe fibrosis. Gender, race, body mass index, HCV viral load and genotype, HIV coinfection, source of HCV infection, and biopsy length were not significantly associated with moderate to severe fibrosis.

Of the 328 patients screened for the study, 204 patients were included in the analysis. The baseline characteristics of those included in the study were similar to those excluded with the exception of daily cannabis use (13.7 percent of those studied used cannabis daily versus 6.45 percent of those not included). Patients who used cannabis daily had a significantly lower body mass index than non-daily users (25.2 versus 26.4), were more likely to be using medically prescribed cannabis (57.1 percent versus 8.79 percent), and more likely to have HIV coinfection (39.3 percent versus 18.2 percent).

The prevalence of cannabis use amongst adults in the U.S. is estimated to be almost 4 percent. Regular use has increased in certain population subgroups, including those aged 18 to 29.

Hepatitis is an inflammation of the liver. Hepatitis C is the most common form of hepatitis and infects nearly 4 million people in the U.S., with an estimated 150,000 new cases diagnosed each year. While it can be spread through blood transfusions and contaminated needles, for a substantial number of patients, the cause is unknown. This form of viral hepatitis may lead to cirrhosis, or scarring, of the liver. Coinfection of hepatitis C in patients who are HIV positive is common; about one quarter of patients infected with HIV are infected with hepatitis C. The majority of these patients, 50 to 90 percent, were infected through injection drug use. Hepatitis C ranks with alcohol abuse as the most common cause of chronic liver disease and leads to about 1,000 liver transplants yearly in the U.S.

Preparing for first appointment with hepatologist

Dec 05, 2012 - 0 comments

questions for hepatologist

Here is a copy of a list that Orphaned Hawk posted in her journal and a list that Hector SF posted in a thread that contain good information and some questions people may wish to ask at their first appointment with the hepatologist.  Thank you to OH and Hector SF for sharing.  I am re-posting in my journal for easy reference.

Questions for the hepatologist:

1. How experienced are you in dealing with Hep C?

2. Do I need a biopsy before treatment?

3. How often will I be doing labs during treatment?

4. What is your protocol for dealing with low WBC or RBC?

5. What about other side effects?

6. How often will I be seeing you during treatment?

7. Who do I contact in an emergency?

8. Will I be able to have copies of all my labs and tests?

9. Will you be available via phone or email to answer my questions?


Here is another list of questions that HectorSF posted in a thread:

1. Be prepared. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue.

2. Before your medical appointment, write down your questions and prioritize them.

3. Maintain your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.

4. Make eye contact before speaking to your medical  provider. Once you
begin speaking, your provider may take notes. This does not mean s/he is not listening.

5. Before you start with your list, ask how much time the provider has for
questions. Respect these limits and you will benefit in the long run.

6. Prioritize your health issues. Be brief but clear.  Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them. It can be reassuring to learn that your symptoms have nothing to do with some disease you have been dreading.

7. When describing your symptoms, begin with the general picture and end
with the specifics. Example: My stomach hurts. I feel nauseous in the morning.

8. Ask for clarification. If your doctor uses words or explanations you do not understand, ask her to clarify or simplify her words.

9. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby or your car.

10. Take a friend, loved one or an advocate. This is especially important for appointments that may be long, complicated, or not routine. Ask your companion to take notes for you. If it’s alright with your provider, you can also audiotape the appointment.

11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.

12. Express your reservations. If your doctor suggests a treatment plan that you have some concerns about, let him/her know. Sometimes these concerns can be easily addressed.

13. Ask if there are any alternatives. If your doctor makes a treatment suggestion and it is not one that you are prepared to follow, ask about other options.

14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near what they imagined.

15. Ask the physician if there are resources or support groups he/she would recommend.

16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you
next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately. If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results.  Additionally, ask the physician what is the best way to contact his office should a need arise that may not require an office visit.

17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports.  This sets a standard that you are the manager of your health care.  It also makes it easier to give copies to
other health practitioners.

18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule.  Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame.

Some questions to ask your doctor...

1. Do I need to be vaccinated for hepatitis A and hepatitis B?

2. What is my genotype? What does my genotype mean?

3. Do I have liver damage? If so, how much liver damage is there?

4. What are my treatment options?

5. Is there one treatment you think is best for me?

6. Are there any clinical trials?

7. What are the benefits of each treatment option?

8. What are the potential risks of each treatment option?

9. How can I protect the people around me from hepatitis C?

10. Do I need to start treatment for hepatitis C now?

11. How will this treatment interact with my other medications?

12. How will you assess whether the treatment is working for me?

13. What should I do if I have side effects? How can I manage the side effects?

14. What are symptoms to pay attention to and look out for?

15. How likely is it that I will develop cirrhosis or liver cancer?

16. If I do not start treatment now, how often should my liver be monitored for liver damage?

17. How often should I see a liver specialist? Primary care physician?

Follow up with Hepatologist, Nov, 2012

Dec 01, 2012 - 0 comments

Failed triple tx w/Incivek


hep c



Saw hepatologist last week.  News is good.  Liver is compensated, no sign of cancer, labs good.

CT results good.  Portal/hepatic veins are fine, no ascites.  

Labs are good:  WBC 7.41 THOU/uL (normal), RBC 4.8 mil/uL (normal), Hgb 15.6 g/dL (normal), Hematocrit  44% (normal), platelet count 158 THOU/uL (low normal), Albumin 3.5 g/dL (low normal), total bilirubin 0.6 mg/dL (normal), direct bilirubin 0.1 mg/dL (normal), and prothrombin time 12.6s (normal), and prothrombin INR 1 (normal).

He will have endoscopy (routine screening).  He will do labs, ultrasound, and see hepatologist in May.

His hepatologist referred him for possible trials (Hep C, G1s, with Cirrhosis and compensated liver, treatment experienced, prior partial responders) but nothing has come up.  She went to the liver meeting in Boston.  It’s her impression that Gilead will apply for approval for sofosbuvir about April, 2013, sofosbuivr treatment for G2's and G3's will likely be interferon free, but sofosbuvir treatment for G1a's will likely include sofosbuvir, interferon, and ribavirin.  

No one knows can know what the final phase trial results with sofosbuvir will show for difficult to treat Cirrhotic, G1a, prior null/partial responders or how long from submission meds available, but things are promising.  She feels sofosbuvir will be approved about the end of 2013.

We are so thankful his liver is still compensated, no cancer, and new treatment is around the corner.  We are so blessed to have a hepatologist who is dedicated to getting rid of his Hep C!