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Avatar universal

Cirrhotic liver and Shosaikoto. Yes or No?

Any Hepper with compensated cirrhosis and portal hypertension who's been taking shosaikoto SST for a long time(ie, >1yr)?
I'd like to know if there are any positive responses or serious side effects.
I'm thinking of taking SST for the long haul, and would appreciate any helpful advice.
13 Responses
446474 tn?1446351282
There is no definitive medical evidence that Sho-saiko-to or “Xiao Chai Hu Tang” (and its seven herbs) has any impact on liver disease progression. Further studies are required as of last year to see if there is any improvement in liver disease. (Memorial Sloan-Kettering Cancer Center)

There is no proven treatment other than curing yourself of the hepatitis C virus that will stop the progression of your liver disease. Being still compensated affords you the last opportunity to treat the hepatitis C virus. Once you decompensate you will no longer be able to treat your hepatitis and you will need a liver transplant at some point in the future the continue living.

In fact since you have cirrhosis and portal hypertension you should be seeing a hepatologist at a liver transplant center and they should be overseeing your liver disease and its complications. Taking certain OTC medicines such as NSAIDS, certain vitamins, supplements and herbs can be toxic to your liver as your liver is a mass of scar tissue and cause your liver disease to progress more quickly or it is possible for these substances to cause liver failure.

Educating yourself about liver disease, cirrhosis and the latest hepatitis C treatments that are available on the market or in clinical trials can have a positive affect on your advanced disease. Shosaikoto SST will be a waste of money but more importantly a waste of the time you have left before there is no going back. Once you decompensate you will suffer more and more with the complications of liver disease. In time you will become disabled and suffer with life-threatening decompensation complications that are the results of portal hypertension. Ascites and edema, variceal bleeding, hepatic encephalopathy, etc. I have been living with these complications for over 2 years now and I can tell you that it will be the most difficult thing you have ever encountered.

As I said I hope you are under the caring of a hepatologist. Since you already have cirrhosis, you have an increased chance of developing Hepatocellular carcinoma (HCC) commonly know as liver cancer. This longer you have cirrhosis the great chance of developing HCC. In order to catch HCC in its early stage all cirrhotics have imaging done every six months. If you are not under surveillance for HCC and it goes undetected by the time you feel ill from the cancer you will have less than a year to live if you don't get a transplant.

As long as you are aware of the consequences of your actions then of course it is up to you to decided if you want to treat or not and if you want to live or not. Unfortunately I have had a number of people who have died recently due to liver disease and I feel it is my responsibility to let you know the danger of "taking SST for the long haul".

As far as side effects...there is a small chance that Sho-saiko-to may cause interstitial pneumonitis, a potentially fatal condition. Liver injuries and hepatitis have been associated with the use of Sho-saiko-to, (Taipei Veterans General Hospital, National Yang-Ming University School of Medicine, Taiwan, ROC.)


Good luck.
Hector
Avatar universal
Thank you for your response. I don't have health insurance and the cost of seeking conventional medical treatments is keeping them beyond my reach at the moment. Herbal remedies and supplements are my last hopes.
446474 tn?1446351282
Here are some options for you...

Clinical Trials:
Perhaps you can get into a clinical trial. It would cost you nothing and the drugs are free. Others here on the forum are more up to date about ongoing clinical trials and they may have some suggestions depending on where you live.
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Obtaining Hep C treatment Drugs at no or low cost:

You may also be able to obtain the treatment drugs for free due to your limited resources.

"In order to provide free or low cost medicines to those who qualify, patient assistance programs were created by the pharmaceutical industry. Besides helping with medication costs, patient assistance programs may offer other services, such as a 24-hour on-call nurse, motivational information to help patients adhere to their medications and tips on side-effect management.

To find out if you qualify for an assistance program, you can visit the Partnership for Prescription Assistance website at www.pparx.org or call 1-888-477-2669.

For help specifically with Hepatitis C medications, you can also contact the companies directly:

• Roche:1-877-734-2797 - The manufacturers of Pegasys plus Copegus have the Pegassist Patient Assistance Foundation.

• Schering:1-800-521-7157 -The manufacturers of PegIntron plus Rebetol have the Commitment to Care program.

• Vertex: 855-837-8394 - The manufacturer of the recently approved Hepatitis C drug Incivek, has the Vertex Free Medicine Program. This program will provide telaprevir (Incivek) at no cost to people who do not have insurance, are not covered by other benefits programs, and have an annual household income of $100,000 or less.

• Merck: 866-363-6379 - The manufacturer of the recently approved Hepatitis C drug boceprevir (Victrelis) also has a Patient Assistance Program. This program covers boceprevir, PegIntron, and Rebetol (the company's brand of ribavirin) for low-income people who do not have private insurance and are not covered by any other benefits programs.

Managing chronic Hepatitis C is hard enough, so don't let the financial burden of treatment interfere with your prognosis. Regardless of how you have weathered today's economic climate, a lack of health coverage or money needn't prevent you from battling Hepatitis C. If pegylated interferon, ribavirin, telaprevir or boceprevir are warranted and financial help is needed, take advantage of the programs in place. By doing so, you have a better chance of being freed from the Hepatitis C virus - without having to climb the economic ladder."
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You say you don't have health insurance.
Are you still able to work?

Since you have cirrhosis you really need to be under the care of a hepatologist. Cirrhosis is a very expensive condition to have. Believe me my insurance company must really hate me. As you should be monitored on an ongoing basis.

You still have time to get things in place. Please use your time effectively. I have heard too many stories of people with no insurance when they need a transplant to continue living and they don't have coverage. While it is still possible to get some type of help it only gets more difficult the sicker you are. Option get less and less over time.
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Are you aware of disability? There are many forms of disability but I will speak of the ones that I have used.
If you become unable to work due to your illness you can apply for Social Security Disability Insurance. You will need doctors records and lab reports to prove that you can no longer work. Two years after SSDI says you first became disabled you will be eligible for Medicare health insurance. I have been paying for COBRA insurance from my previous employer for almost 2 years now and will be eligible for Medicare very soon. Many people on Medicare get transplants. There is also Medicaid for people with limited assets and financial resources.

Medicaid – The federal and state public insurance program for low-income people meeting eligibility requirements, Medicaid programs cover HCV treatment in every state. However, the enrollment criteria, amount that you pay for prescription drugs, the number of drugs you can get in one month and the requirements to get drugs usually differ between states.
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State Programs – Many states have HCV assistance for those in financial need. While it may take a bit of investigative work, a simple phone call to your state’s Department of Health and Human Services Department can reveal programs for helping afford the cost of physician care and HCV antiviral medications.
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Obviously there is nothing easy about cirrhosis and its treatment. But you still have time to get things in place so when you do decompensate and develop End-Stage Liver Disease ESLD you will be able to be treated and when you need to have a transplant.

Again you should find a transplant center near you and talk to them about what options are available. They may have a program where they care for people that don't have insurance. It is worth checking out. We are taking about relieving suffering here and a chance to continue living. I don't know what is more important than that?

Don't give up try to find a way. You are lucky to still have time. Unfortunately other don't and it is a very painful long and drawn out way to die. Please think about it. Health-wise you are better off then I am after decompensating over 2 1/2 years ago and developing liver cancer 8 months ago. My odds of living beyond 2 years are not odds anybody would want to have but I am not giving up and I am believing that somehow someway I am going to survive this. Things are only going to get worse for me before they get better. I don't want you to go through what I have during the last few years so please try to find real options. At best Sho-saiko-to would slow down the progress of your liver disease but as long as you have hepatitis C the virus will in time lead to liver failure. I still have hepatitis C also and will have to treat it after my transplant as it is too late for me to treat my hepatitis C.

I hope others have soon concrete suggestions for you.
You should post your location and everything you know about your present health status so that we can be of as much help as possible.

Hang in there.
Good luck.
Hector
1856494 tn?1340546214
Never had a dad or brother growing up.  You fill both those voids for me in my crazy "wonder ifs".   You are my benign male sage through both of my treatments come to think of it.  I guess I am trying to say you contribute so much more than your incredibly valuable infor and advice.  I just feel in good hands sharing your edifications.  I be grateful.
1856494 tn?1340546214
I sense your anxiety about what avenue to take.  You are doing the best with what you know.  me too.  Seems there is always another nugget of info that might make all the difference.  I hope you found some here.  Commiserate is our middle name.  

You are already a warrior.  Welcome.
Avatar universal
Thank you for all the leads up you've provided. I'll start going through all the options asap. I understand the importance of not giving up the fight in dealing with this disease and truely appreciate your encouragement. I live in Vegas and so far have only found one website that vaguely promises assistance for people seeking hep c treatment. I can also rule out SSDI and Medicare/Medicaid because I haven't worked since losing my job back in 06. Again, thank you for all your concerns and advices. I wish you all the bests in your fight.
163305 tn?1333672171
I believe CPMC ( out of SF) has a liver clinic in Vegas.
You can contact their web site, look under financial assistance.
You'd also have to get assistance from Sutter Health Physicians foundation as well.
These  are based on low income and  not having insurance.
Good luck.
446474 tn?1446351282
"I can also rule out SSDI and Medicare/Medicaid because I haven't worked since losing my job back in 06."

Not working doesn't rule out anything. AS long as you can prove that you can perform the tasks that you have have used in the past to work and you have enough working time to get SSDI. You just need a doctor to confirm you are too ill to work and that you meet certain requirements of having cirrhosis. You said you are compensated, correct? If you are decompensated have ongoing ascites, hepatic encephalopathy, and some other symptoms. The requirement are listed in the SSDI Blue Book.

Since you are not working you should qualify for a state program that will include health insurance. Perhaps your state Medicaid program.

I think OH is right that CPMC has a remote office in Vegas. There are a good transplant center and should be able to help you.

I will try to add more details later as I have been a the transplant center all day.

If you could provide more info on your cirrhosis it would be helpful.

I have to run. I will write later.
Actually I know someone in Vegas that has a doctor. I will get some info from him for you....

Hector
1930700 tn?1327068504
Your a special human being Hector.  I wish the best for you.  I hope one day you will be able to write a book because you certainly have the knowledge and the experience to help so many people like you do in the forum.  Your stuff needs to be published worldwide.

millie
Avatar universal
I completely agree - Hector is an angel.  
446474 tn?1446351282
Here is information on California Pacific Medical Center (CPMC) and their liver disease and transplant program. As OH said, CPMC has a very good liver disease program. If you can get into their program you would be in one of the best liver disease programs in this part of the country.

Here is a link to their "Liver Disease Management and Transplant"

http://www.sutterpacific.org/services/liver.html
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California Pacific Medical Center's (CPMC) Liver Disease Management & Transplant Program is unique among Northern California centers in our strong commitment and dedication to community outreach.

Whether you live in Northern California or Nevada, we bring our specialists to you. Our twelve care centers, as well as our hepatologists, are part of Sutter Pacific Medical Foundation, a group of 240+ doctors who offer primary, specialty and complex medical care. Among the services we offer at our care centers include:
• Liver transplant evaluation, pre and post-transplant care

• Liver disease and liver cancer management

• Management of fatty liver, autoimmune, genetic and metabolic liver disease

• Hepatitis B and C disease management

• Clinical trials for hepatitis B and C and fatty liver disease

Our office at 3820 S. Hualapai Way, in Las Vegas, NV, offers liver disease and transplant services.

3820 S. Hualapai Way, Las Vegas, NV 89169

415-600-1020, Liver Disease & Transplant

Services and Doctors
Liver Disease & Transplant
- Adil S. Wakil, MD
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http://www.sutterpacific.org/patients/charity.html

Financial Assistance:

Sutter Pacific Medical Foundation offers financial assistance to patients who are uninsured or have a low income and may have difficulty paying bills. Patients who submit applications and are approved may be eligible for full or partial relief from charges.

Sutter Pacific's Financial Assistance Program is designed to:

Provide care to uninsured patients earning up to 400 percent of the Federal Poverty Income Guidelines (FPIG). The FPIG is updated each year in February.
*    View the Federal Poverty Income Guidelines
*   Provide catastrophic protection to low income uninsured patients by limiting their liability to 30 percent of their annual household income.

To apply for financial assistance, send the following documentation and complete the Statement of Financial Condition Form.

    * Your two most recent paycheck stubs
    * Your two most recent bank statements (all accounts)
    * Your most recent tax return

Review this letter and checklist. Then, send your completed packet to:

Sutter Physician Services
P.O. Box 255385
Sacramento, CA 95865
Attn: BAR-Self Pay Unit

Patients are encouraged to fax their application and documents to 916-854-6961 to our secure fax line. Copies of Sutter Pacific’s Charity Care Policy are available by calling 707-521-8878 between 8:00 am - 5:00 pm.

Your Confidentiality is Guaranteed
Confidentiality of information and individual dignity will be maintained for anyone who seeks charitable services. The handling of personal health information will meet all HIPAA requirements.


Instead of you trying to figure out the best healthcare insurance by yourself, you could have them assist you. They do this type of thing every day and it is part of their job. So let an expert help you get the coverage you will need for all services they provide at CPMC.
Also they maybe able to assist you with obtaining disability as when you do decompensate and develop End-Stage Liver Disease (ESLD) you will be disabled and limited in your ability to do the things you used to be able to do. They will have the medical records and doctor's support you will need to apply and prove you are disabled.
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CPMC may have hepatitis C treatment available to you also at no or low cost and they may have a clinical trial with the latest treatment drugs that they might think would be your best chance of curing your hep C.

Advantages:
* They can evaluate your current health status.
* Monitor you over time.
* Help you to stay as healthy as possible for the longest time.
* And IF you should need a transplant at some time you will already be in their system which will give you the best chance of getting a new donor liver.

As I am familiar with CPMC through word of mouth and they are the only other liver transplant center besides the one I go to here in San Francisco.
If I were you I would try to get into their program as it appears by far the best option for you and it doesn't eliminate trying to get some type of health insurance whether through disability or some other means in the meantime. I would think CPMC would want to help you to get insurance so they could be paid at least for some portion of the services they will be providing you. I am sure you would not be the first person who has had problems with health insurance and had cirrhosis.

So I would do anything you can think off to make them like you and except you into their program. These people can literally save your life, so I would apply all of your resources to getting in to this program.

Where there is a will, there is a way.
Best of luck!
Let us know what happens.

Hector
Avatar universal
Thank you, orphanedhawk.
@Hector, It was perhaps wishful thinking when I said I was compensated. Decompensated is closer to present state of health. I lost my job back in 06 due to a bout with hepatic encephalopathy(self diagnosed much later). The shift manager thought I was acting weird because I was on some sort of illegal dopes, so he called an ambulance and had them hauled me to the ER where they drug tested me and kept me under mandatory observation for a couple days. And that's how I ended up losing my job. I wasn't seeing a hepetologist, so no body knew what was going. Anyway, I'll start making calls around to see what I can come up with in term of assistance. Thank you again. I hope everything go smoothly with your transplant.
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