Hepatitis C and Baby Boomers

Hepatitis C has made headlines recently, following the release of a study by the Centers for Disease Control and Prevention (CDC) that, among other things, revealed that one of every 33 baby boomers (people born between 1945 and 1965) is living with hep C. Furthermore, research reported in the Annals of Internal Medicine showed that three-fourths of the approximately 15,000 people who died from hep C in 2007 were between the ages of 45 and 64.

These findings and more were reported in an article in The Wall Street Journal, Hepatitis C deaths up, baby boomers most at risk. Some of the notable items in the story include the following:

"Deaths from liver-destroying hepatitis C are on the rise... "

"About 3.2 million Americans are estimated to have chronic hepatitis C, but at least half of them may not know it."

"In fact, in 2007 there were 15,000 deaths related to hepatitis C, higher than previous estimates — and surpassing the nearly 13,000 deaths caused by the better-known AIDS virus."

The CDC is deliberating "... whether to change testing guidelines to recommend that anyone born between 1945 and 1965 get a one-time screening."

I hope hep C screening becomes more widely adopted. By the time I experienced symptoms caused by hep C, my only option was a liver transplant. Discovering the disease early and getting treatment using one of the promising new, more effective drug regimens could save many lives.

Photo by Vangelis Thomaidis

New Year, New Opportunity?

Wow! It's been nearly two months since I last posted on this blog. The chaos of the holidays have kept me busy, but now they are over and there's lots of news to share.

The biggest change for me in the past 60 days is that my doc switched my immunosuppressant from Prograf to Gengraf. The docs at my transplant center are going to try one of the new Hepatitis C treatments on a small group of transplanted patients and those patients must take Gengraf. I'm one of the people being offered the chance to try the treatment, which creates a dilemma for me. A year or two ago I probably would have jumped at this opportunity, but now that I feel better I'm very reluctant to go back to feeling unwell all the time, which is almost certain to happen on the drug regimen. And because my liver has become cirrhotic, I'm not confident it will work.

So what's the right road to take? For now I've adopted a wait-and-see approach. Because it takes just four weeks to know if the meds are effective, I want to observe what happens to some of the transplant patients who take them. If it's successful, I might give it a go. Regardless of the outcome, I'm very grateful to have this choice.

In the meantime I'm trying to determine if I can handle the Gengraf side effects. The acne (ugh! face and back!) and hair growth (face and who knows where) aren't pleasant, but they fall into the "inconvenient" category. Leg cramps, night sweats, upset stomach, etc. - these are a bigger issue.

The year is off to a good start and 2012 promises to be as much of a roller coaster as ever. Here's wishing you and yours peace, grace and health.

Photo courtesy of michaelaw

FDA Gives Two New Hep C Medications Priority Review Status

Back in 2006, when I had my liver transplant, the heptologists at my transplant center told my husband and me that a new medication for treating Hepatitis C was in clinical trials and would be available the following year. We heard the same news in 2007, 2008, 2009 and 2010. Our skepticism is understandable, don't you agree?

Yet it appears that in 2011 our long wait will end. The FDA is giving Priority Review status to telaprevir, which was developed by Vertex Pharmaceuticals for people with genotype 1 chronic hepatitis C. In addition, Prioirity Review has been given to boceprevir, an oral hepatitis C virus (HCV) protease inhibitor developed by Merck.

The FDA gives Priority Review designation "...to drugs that offer major advances in treatment, or provide a treatment where no adequate therapy exists... The goal for completing a Priority Review is six months." The target review date for telaprevir is May 23, 2011 (I could not find a review date for boceprevir).

Both medications show better cure rates and, for some people, reduce the treatment time. Furthermore, they will be the first drugs that directly target the Hepatitis C virus.

I don't know how quickly the drugs will reach the market after FDA approval but I hope it doesn't take long. My poor liver has taken enough abuse from this devastating virus.

Photo by Nina Briski

Read It: "Wall Street Journal" Article About Hepatitis C

I'm one of many people with Hepatitis C who can't determine how I contracted the virus. A Wall Street Journal article, "Health Danger of Parties Past," published Sept. 20, 2010, speculates that "some former party animals may be carrying a harmful reminder of their youth and not know it." The "reminder" is Hep C.

The article describes circumstances - some innocent, some less so - under which people might have been exposed to virus-tainted blood.

People who used intravenous drugs, snorted cocaine with a shared straw, or had an unsterile tattoo or body piercing could be infected with hepatitis C and not realize it. Some people may have innocently been infected if they had a blood transfusion before 1992, when the blood supply began to be screened for the virus. Others may have contracted the virus simply by sharing a toothbrush or a razor... About 20,000 people are diagnosed with hepatitis C each year, and some two-thirds of those are middle-aged, having contracted the disease 20 or 30 years ago.

Could this explain my situation? Perhaps - 30+ years ago, while in my late teens and early 20s, I was a partier, but I avoided heavy-duty drugs. I borrowed my fair share of toothbrushes and razors, however.

Anyone looking for a quick overview of Hep C and Hep C treatments will find the article useful. And to the FDA: Please get the new treatments approved ASAP. Some of us really need them.

Still Riding the Hep C Rollercoaster

In May 2006 I learned that Hep C had damaged my liver so badly that I needed a liver transplant. Thus began my rollercoaster ride, which begat this blog. And that ride continues ...

In January I started treatment on pegylated Interferon and Ribasphere and last month, at the 12-week mark, we learned the treatment hadn't cleared the Hep C virus from my system. In other words, it didn't work. It was no surprise to us: After all, the treatment didn't work 2 1/2 years ago (seven months after my transplant) when I was placed on it.

But there was a bright spot in the results - my liver enzymes, Alkaline and GGT all had dropped significantly and this was news to celebrate. In spite of research indicating no benefit from staying on treatment for "maintenance therapy," we decided I would continue on it because of the improved impact on my bloodwork. However ...

My last three sets of blood test results show a steady rise in liver functions. AST and ALT are closing in on 200 and GGT is 519! What the hell?!

This is virgin territory. It never occurred to me that the numbers might increase while I'm on treatment. Candidly, I'm not comfortable in this realm of the unknown.

Next step: Repeat basic labs in just over a week, along with PT-INR and Hep C viral load count. Depending on what those results show, my doc may order a liver biopsy sooner than later. And I'll keep riding the rollercoaster, hanging on for dear life.

Photo by Lars Sundstrom

The Miraculous Merits of Magic Mouthwash

One of the ongoing side effects I’ve experienced on my Hep C treatment is sensitivity in my mouth. The area under my tongue, the inside of my lips and even spots on my tongue are uneven – not smooth like they should be – and feel as though a sore could break out any time. Some areas have been painful and I’ve had occasions where my teeth ache and it hurts to bite down, but not in the “I need a root canal” sense.

At the most recent visit to my primary care doctor I described the discomfort and with a stroke of her pen, Dr. M. prescribed relief for this annoying side effect that’s plagued me for more than two months.

The miracle: Magic Mouthwash. This stuff is amazing. Swish just a bit of it in your mouth and it immediately numbs and soothes.

Magic Mouthwash is often given to people with oral ulcers, especially cancer patients undergoing radiation or chemotherapy. I’d never heard of it until a couple of years ago and forgot about it until the doc wrote my prescription.

Please note: While the mouthwash has a cute, consumer-friendly name, it is mixed by a pharmacist according to the prescribing doctor’s specifications. It is not available without a prescription.I’m always searching for ways to ease the discomfort or challenges caused by my Hep C, transplant, medication, whatever. In my experience, people sharing their experiences with others can be as beneficial as a visit to the doctor.

If you’ve experienced similar issues or other problems, please leave a comment and describe how you dealt with it. I appreciate any and all input.

Photo by Mathias Alvebring

Two Months into Treatment and the News is Still Good...

Note: This post was published March 31, 2010

I had blood work done earlier this week and my transplant coordinator called me with good news - my liver enzymes have really dropped. From their highs of nearly 500 and 600, they are now in the 80s and just over 100. I believe it's been, maybe, two years since they've been this low.

Of course, given the craziness of Hep C, these lower numbers don't mean that my liver isn't inflamed or becoming more damaged (although higher enzyme levels indicate the opposite). Huh? This isn't logical at all. Nonetheless, it MUST benefit my liver in some fashion and I'm taking it at face value.

This progress makes it easy to manage the inconveniences and side effects of treatment. My list of treatment-related complaints is small and I know how fortunate I am to tolerate it this well. Fatigue is still the big issue for me... and not far behind is "brain fog." (The combination of menopause and the meds leaves me with the cognitive function of a pre-teen with ADD; if only I could remember - and finish - one thing.)

Over the weekend I learned about "Riba rash" - apparently, Ribavirin can cause a host of skin problems including red, itchy rashes that sometimes creates blisters. A small patch popped up on my torso, but it looks like it might fade and disappear. (FYI - I used Eucerin Calming Cream and the itching.stopped.)

My next visit to the lab (April 12) is the BIG ONE. My viral load will be measured and the following week I'll visit my transplant center for a discussion about the results and what's next.

My Hep C Treatment - Four Weeks and So Far, So Good

Last week I marked four weeks of pegylated Interferon and Ribavirin treatment, and visited my treatment coordinator to touch base about how it's going so far. Fortunately, the new is good.

I'm tolerating the meds well. I'm tired, but generally speaking I'm handling the fatigue and other minor side effects pretty successfully. Biggest challenges - nagging headache (off and on), yeast infection, the inside of my mouth feels unusual (as though a sore could pop up anytime) and fatigue. When I need a nap, I need one NOW.

Considering the spectrum of possible side effects, I'm doing great. It's early in treatment and something else may occur, but I'm taking it a day at a time and my transplant team and I are pleased - and I'm very grateful. For now, I only need labs drawn every other week and won't have to visit my transplant center again until mid-April.

Sometime over the next few days I should get feedback about the viral load. After four weeks, a big drop should occur - say prayers, cross fingers. I'll be antsy and curious until that info arrives.

A huge thanks to the people who shared their stories. Hep C is tough and the treatment can be brutal. Docs at my transplant center SWEAR that new meds will be available next year. We can't wait!

Photo by Thiago Felipe Festa

Deja Vu: I'm Back on Pegylated Interferon and Ribavirin

Hepatitis C is like your shadow - this wicked, stubborn virus is always present, liver transplant or not, dogging at your heals, never really letting up. When docs determined in Nov. 2009 that Hep C was causing my elevated liver enzymes, we all decided that trying treatment again was my best option (my choices were to either try treatment or wait, and I'm not one to wait around). I started Jan. 19 and thus began the journey to discover a new phase of "normal."

When I was treated in 2007 I was still recovering from my transplant and post-transplant complications, so it was tough to tell how the meds affected me. This time, in a more controlled environment (so to speak), it's easier to distinguish the side effects. I'm pretty lucky, in that I haven't experienced anything extreme. My side effects have included chills (no fever, but it feels like my body temperature is awry - my forehead is cool but cheeks and neck are really hot), intermittent headaches, yeast infection and most of all, fatigue. So far, not too bad. I start feeling the impact about 12 hours after my shot.

I've never spoken with anyone in my shoes, who is undergoing treatment post-transplant. If you've been in these shoes, please comment and tell me about your experiences. Or even if you've been treated and haven't had a transplant, I'm interested in what you went through. Do the side effects become worse over time, as the meds build up in your body? Did you lose hair (this is a concern for me). Do you have planning strategies you can share - I have a husband and two teenagers and just keeping us fed is a challenge sometimes.

Photo by Vangelis Thomaidis

Liver Transplant and Hepatitis C Data: Sobering Stats

A recent email from HCV Advocate included an item that immediately caught my attention, "HCV Treatment after Liver Transplantation."

The report, recently published in Liver Transplantation, reviewed data on HCV treatment in post liver transplant patients. I gasped when I read one of the statistics noted in the report:

The 5-year survival rate is 30% for those with HCV who have had a liver transplant and have progressed to cirrhosis

Stats like this keep me awake at night. My liver transplant was just more than two years ago and already fibrosis, the precursor to cirrhosis, is present in my liver. Granted, the fibrosis score is fairly low, but Hep C is damaging my new liver.

My recent bout of elevated liver enzymes had me wringing my hands for this very reason - and that's before I saw the stat. Yikes!

The course of Interferon and Ribavirin I took in 2007 didn't clear the Hep C virus from my system. A number of new meds are in development and appear promising. Here's hoping they reach the market soon.

Celebrating Because a Friend is Cured of Hep C

Late last year I received news from a close family friend that he is “… officially cured of Hepatitis C.”

What incredible, fabulous news! Chris discovered that he had Hep C nearly 13 years ago and recently underwent 18 months of treatment on Pegulated Interferon and Ribavirin treatment. His viral count has been zero (undetectable) for more than six months, which is the benchmark you must reach in order to be “cured.”

I’m thrilled for Chris and his family. His wife is one of my dearest friends and their family, including two busy teenaged children involved in sports, was stressed to the core during his grueling treatment. Like most other patients taking these drugs, Chris was severely fatigued, experienced weekly bouts of flu-like symptoms and suffered from symptoms of depression. In spite of all the challenges, he stuck with the treatment and, thank God, it paid off.

Since my transplant I’ve learned that they key to overcoming Hep C is to go undergo treatment before your liver becomes too damaged. I know first-hand how difficult treatment is; I first tried the treatment in 2000, as a single mom raising two children running my own business; I only lasted three weeks. It proved to be too debilitating (I felt sick the entire time and couldn’t work much; not working wasn’t an option), so I quit.

Just six years later, Hep C had damaged my liver beyond repair and a liver transplant was my only answer; without it, I would die. Five months after transplant, the virus had already damaged my new liver (I had stage 2 – 3 fibrosis) and a couple of months later I resumed the Interferon/Ribavirin treatment. Sadly, the drugs weren't effective; however, a biopsy last summer showed that the fibrosis had dropped to stage 1, but the improvement can't be directly attributed to treatment.

If you’re debating whether or not to try treatment for Hep C, DON’T WAIT! Get every bit of support you can and start Hep C treatment as soon as you can. This disease doesn’t just shorten your life – it diminishes your quality of life.

Take it from me: The alternative to Hep C treatment – a liver transplant – is nothing you want to have to undergo.

Need a Liver? Grow Your Own

The current issue of TIME magazine has a fascinating cover story, "Stem Cell Research: The Quest Resumes," that is a must-read for anyone suffering from chronic illness or disease. As stated in the article, "On Jan. 23, after nearly a decade of preparation, the Food and Drug Administration approved the first trial of an embryonic- stem-cell therapy for a handful of patients paralyzed by spinal-cord injuries."

Scientific gains from these trials and other ongoing stem-cell research have the potential to impact nearly every facet of medical research, including liver disease and organ transplantation. It's not implausible, researchers say, to expect that patients will be able to grow their own replacement organs, thereby negating the need for immunosuppressants. Given the negative side effects associated with these drugs (high blood pressure, high blood sugar, kidney damage, magnesium depletion, upset stomach and more), eliminating immunosuppressants will be extremely beneficial.

Beyond transplants, stem cell research could one day lead to a cure for diseases such as Hepatitis C. If a medical researcher somewhere needs a Hep C-infected, post-transplant liver patient to participate in a clinical trial involving stem cells, count me in. My children are just 15 and 16 years old and if I want to live long enough to meet my grandchildren, scientific breakthroughs must occur. I'll gladly do my part!

A New Hepatitis C Treatment Could Save My Life

I have hepatitis C. It's a disease without a cure, plagues four million Americans and is the leading cause of liver transplants in the US and Europe. I have type A, which is the most common genotype in the US and most difficult to treat.

My transplant center has a highly regarded hep C research and treatment clinic, which benefits me because hep C doesn't go away after a transplant. The virus spreads throughout your body and surgery removes only the organ damaged by the virus; it doesn't eradicate hep C from your body. For transplant patients like me who have hep C, the hope is that the virus will kick-back and maintain a low profile for a few years after surgery, before starting to scar (called fibrosis, the precursor to cirrhosis) the new liver.

Sadly, my virus is literally and figuratively "Type A." (Get it? Ha ha, well, uh I guess it's really not that funny.) Fibrosis grade 2 to 3 was discovered in my liver four months after my transplant and not long after that, I began the standard treatment (pegulated interferon and ribavirin). Even more sadly, 12 weeks of shots, pills and feeling like crap later, we discovered that treatment didn't clear the virus from my system.

[On the upside, my most recent biopsy (June 2008) showed that my liver actually looked better than it did 14 months earlier with the fibrosis only at grade 1 to 2.]

Nonetheless, I know that my new liver is vulnerable and I'm concerned because my transplant center doesn't perform second transplants on patients whose livers are damaged by cirrhosis (regardless of whether cirrhosis was caused by hep C, alcoholism or another condition). The chief liver transplant surgeon told us this prior to my surgery but at the time, it didn't register. Back then I was focused the countless details involved with my first transplant and a second transplant just didn't seem to warrant consideration; now, it's top of mind.

Because of my susceptibility I try to keep informed about the promising new drugs currently in development, one of which was featured in a story posted yesterday on reuters.com. Schering-Plough released phase II data about its clinical trials for boceprevir at the annual meeting of the American Association for the Study of Liver Diseases. Results indicate that boceprevir used in combination with the standard treatment is statistically more effective in clearing the hep C virus. Additional improvement is noted if patients start standard treatment before boceprevir is introduced.

You go, Schering-Plough and Vertex Pharmaceuticals and all you other drug companies and scientists who work hard to find new treatments and/or a cure for hep C! Along with 170 million other people around the world who are infected with hep C, I give you thanks and, if I could, I'd give each of you a gigantic hug. You’re my heroes.

I'm curious to get your thoughts about clinical trials and funding for medical research and, in particular, drug development. People have such varied opinions about who pays for drug research and whether government funds should be spent on these endeavors.

Personally, I wish we could take even 10 percent of the money spent on the 2008 presidential election and put it toward something positive and useful, like medical research.