Thank You for Your Comments & Support

Sometimes I feel so isolated.  It's really hard watching someone you love deteriorating right before your eyes; and there is nothing that you can do, because the very thing that is eating them up inside is the only hope of a cure.  But when I get your comments, I know that I am not alone.  We are not alone.  And I thank you so much for being there!!  You are the best medicine ~  for my husband and for me.  So I just want to say thank you.

Disability Hearing Scheduled

We heard from Social Security. My husband’s hearing is set for December 4th. I am not hopeful. As I said before, it is my understanding that in order to qualify for disability under Hepatitis C, your symptoms have to be extreme, i.e. internal bleeding, severe encephalopathy or on the transplant list. They don’t take into account the extreme fatigue, lack of stamina, and depression resulting from hep c.

I hope I’m wrong. I’ll let you. But if you’d like to get some info for yourself, the address is: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05.

Keep in mind that you may qualify under another category, such as mental disorder for depression. There’s a lot of important information on Social Security’s website. If we knew then, what we know now, we would have gone about the entire process very differently. So I hope someone out there can benefit from the lessons we have learned.

The Emotional Roller Coaster that is Hep C

Tonight was shot night- week 10.  I hope this week is better than last week.  Last week was truly rough.   Steve was feeling really awful.  Constantly dizzy and nauseous.

Early in the week he became very emotional.  He started recounting his life, thinking about all the things he would have done differently, and all the words he'll never have the opportunity to say.  He even cried uncontrollably for hours.

By the end of the week, he was miserable and frustrated,  Everything was irritating him.  And I have to admit, it got to me.  I couldn't take it anymore, and we started arguing over the smallest things.  It was rediculous.  Luckily, we realized that the stress had gotten the best of us.  We talked it out, and this week is off to a much better start.

Study Shows Nitazoxanide Could Have the Potential to Eliminate the Need for Ribavirin in the Treatment of Hepatitis C

Found an article on Medical News Today's website that suggests that treatment with Nitazoxanide (Alinia) and peginterferon alpha-2a could have the potential to eliminate the need for ribavirin in the future. Thought it was interesting. Hope you do as well.

Romark Announces Presentation Of New Data For Nitazoxanide In Chronic Hepatitis C At AASLD 2008

Article Date: 04 Nov 2008 - 0:00 PDT

"Romark Laboratories, a privately held biopharmaceutical company, announced that data from studies of nitazoxanide in chronic hepatitis C virus (HCV) infection are being communicated in three presentations made at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD), also known as The Liver Meeting(R), and the 50th Anniversary Meeting of the International Association for the Study of the Liver (IASL) in San Francisco, October 31 - November 4, 2008."These new studies confirm earlier data suggesting synergistic activity between nitazoxanide and peginterferon in genotype 4 patients and provide a first look at sustained virologic response in a limited number of genotype 1 patients," said Jean-Francois Rossignol, M.D., Chief Science Officer of Romark Laboratories and discoverer of nitazoxanide. "These data also provide interesting insights into the mechanism of action of nitazoxanide, including a potential role for its combination with STAT-C drugs, and confirm previous findings related to its safety."The three presentations include:-- "Evaluation of a 4 Week Lead-In Phase with Nitazoxanide (NTZ) Prior to Peginterferon (PEGIFN) Plus NTZ for Treatment of Chronic Hepatitis C: Final Report," J.F. Rossignol et al., Sunday, November 2, 4:15 PM PST (Oral Session IASL #87), and Tuesday, November 4, 8:00 AM - 12:30 PM PST (AASLD Presidential Poster #1848)In this Phase II study, 44 patients (40 with HCV genotype 4; 3 with HCV genotype 1; and 1 with HCV genotype 2) received 4 weeks of nitazoxanide 500 mg twice daily followed by Pegasys(R) (peginterferon alfa-2a) and nitazoxanide for 36 weeks. Data from Romark's STEALTH C-1 trial was used as an historical control. Analysis of data was by intention-to-treat.Thirty-five of 44 patients (80%) treated with a 4-week lead-in phase of nitazoxanide followed by the addition of peginterferon for 36 weeks experienced a SVR 24 weeks after the end of treatment compared to 50% in the standard of care (SOC, peginterferon alfa-2a plus ribavirin for 48 weeks) historical control group (P = 0.006), 61% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus peginterferon alfa-2a, and 79% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus SOC.Of the 44 patients in the study, 78% (n=40) of patients with HCV genotype 4, 100% (n=3) of patients with HCV genotype 1, and 100% (n=1) of HCV genotype 2, had an SVR with undetectable virus at 24 weeks following end of treatment.Adverse events reported for these 44 patients were similar to those reported in the STEALTH C-1 trial. Patients treated with nitazoxanide experienced no more side effects than patients who received the SOC therapy. Only one of the 44 patients discontinued therapy due to noncompliance. There were no serious adverse events or discontinuations due to adverse events."These data confirm findings of our STEALTH C-1 trial related to safety and efficacy of nitazoxanide in patients infected with HCV genotype 4, show that the nitazoxanide lead-in phase prior to standard of care treatment can be reduced from 12 to 4 weeks, and indicate that ribavirin may not be needed to maintain SVR," said Emmet B. Keeffe, M.D., Chief Medical Officer of Romark Laboratories.-- "Potential Role for Nitazoxanide in Combination with STAT-C Agents for the Inhibition of HCV Replication Without the Development of Resistance," Korba, et al. Sunday Nov. 2, 5:30 PM PST (Oral Session #115)This oral presentation by Brent Korba, Ph.D. of Georgetown University Medical Center, described preclinical studies demonstrating synergistic interactions between nitazoxanide and direct-acting antiviral drugs targeting NS5B (2'C methylcytidine and HCV-796) and NS3 (telaprevir and BILN-2061) in HCV replicons. Nitazoxanide was also active against telaprevir- and 2'C methylcytidine-resistant mutant replicons. The authors concluded that nitazoxanide is a good candidate for combination therapies with STAT-C agents in the absence of interferon or ribavirin.-- "Nitazoxanide (NTZ) is an Inducer of eIF2a and PKR phosphorylation," Elazar et al., Tuesday, November 4, 8:00 AM - 12:30 PM PST (Poster #1881)This poster presentation by Menashe Elazar, Ph.D. of the Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University School of Medicine, showed that nitazoxanide increases the intracellular levels of phosphorylated eukaryotic translation initiation factor 2alpha (eIF2alpha), a key mediator of host cell antiviral defenses. Co-treatment with interferon increased nitazoxanide-induced eIF2alpha phosphorylation. . Nitazoxanide was also shown to increase the phosphorylation of protein kinase R (PKR), a key step in the activation of PKR's kinase activity towards eIF2alpha."Data presented in each of these communications has provided important information in guiding the ongoing clinical development of nitazoxanide," said Dr. Rossignol.About Hepatitis CHepatitis C is a blood-borne infectious disease that is caused by the hepatitis C virus (HCV). It is the most common cause of chronic hepatitis in the U.S. and may eventually lead to cirrhosis, liver cancer and liver failure. The disease is transmitted by contact with HCV-infected blood. A large majority of those infected do not show symptoms, but fatigue, abdominal pain and nausea can be common. The current standard treatment of care, peginterferon and ribavirin, is effective in about half of all patients treated. According to the Centers for Disease Control, HCV affects an estimated 4.1 million Americans.About Romark LaboratoriesRomark Laboratories (http://www.romark.com/news/11032008.aspx), a privately held biopharmaceutical company, has discovered and developed a new class of small molecule antivirals known as thiazolides. The Company is developing nitazoxanide, the first of the thiazolide class, for the treatment of chronic hepatitis C, and is developing other new thiazolides for treating viral diseases including chronic hepatitis B. Alinia(R) (nitazoxanide) is approved by the U.S. Food and Drug Administration and marketed by Romark for the treatment of Cryptosporidium and Giardia infection.Romark Laboratories http://www.romark.com/news/11032008.aspx

I found the article in Medical News today. To access the article directly, the address is: http://www.medicalnewstoday.com/articles/127968.php.

Wk 8 of Triple Therapy: Experiencing Severe Shortness of Breath

I am really worried. Went out this evening, just to walk the dog, with my husband. (It was a short walk.)

My husband got so out of breath I thought he was going to collapse again. He said his chest felt really tight, and he could hardly breath. He also said it happens often, but he doesn't want to tell the doctor. He's afraid he'll stop the treatment. I'm afraid he is going to have a heart attack.

I don't know what to do...

Things to Know When Applying for Disability

For those of you that are looking for information on applying for disability, social security’s website, www.socialsecurity.gov, has a lot of useful information.

There is a section that reviews the amount of work credits you need to have in order to be eligible for disability benefits. It’s called How You Earn Credits. It explains what work credits are, how you earn them, and toward the middle of the page there is a table that tells you how many credits are necessary to be eligible for disability benefits.

In addition to that, the guidelines that social security uses to determine if someone is disabled can also be found on the site: Blue Book – September 2008.

When it comes to qualifying under Hepatitis, they ask for some severe conditions such as hemorrhaging from the esophagus or stomach; fluid around the lungs, or encephalopathy. According to the lawyer we are using, rather than trying to qualify for disability under Hepatitis, it is easier to qualify under depression (which is typically a direct effect of having hepatitis). Those symptoms can be found under Mental Disorders.

On a personal note, what I have learned from our experience is not to be brave. When you see the doctor, and s/he asks you how you are doing, don’t say fine, ok, etc. Be honest! If you feel lousy, tell the doctor I feel lousy. Otherwise, what you thought was just polite conversation will be in your records when you go to apply for disability. Usually the doctor will transcribe something that sounds like this: John Doe presented to me today in good spirits or a pleasant manner. Protect yourself. Make sure your record reflects how you really feel.