I am a 59 year old man with Hep C. Diagnosed Stage 3 Cirrhosis Severe Steatosis

[Bama]

Hello,my name is Mayo.I am a 59 year old man with Hepatitis C (genotype 2C ? )
  I have been diagnosed with Stage 3 Cirrhosis,Severe Steatosis w/ Bridging Fibrosis,
   and my Cirrhosis / Steatosis is of the alcoholic type. My Hepatitis C I have had for a very long time,not exactly sure but diagnosis was at least 17 years ago I think,I also contracted Hepatitis B as a teenager and nearly died due to the Hepatitis & drug use.
I think I got the Hepatitis C from IV drug use as I was heavily addicted to narcotics.I have been treated for Hep C with Diclenza & Sovaldi and was supposedly the virus was undetectable also use of herbs that were not recommended. Long story short it came back and I have developed the Cirrhosis,I was very sick with Ascites & Everything else fun that goes along with this. I have been told that I still have the virus through testing and I have good and bad days. I have recently (6 months) started having really bad pain in both feet and bad pain in my joints. I am on 105mg. of Methadone daily and its not enough for my pain.I have 800mg Motrin but NSAIDs are not very good for me,and I take Spironlactone for a fluid pill.
I am waiting on a Disability Hearing in January,I have been out of work for about 19 months but I have been blessed,BY THE GRACE OF GOD I GO. I am a Pipe Fitter & Plumber by trade also a Fitness Trainer,I have worked most of my life.I am sik ya'll this stuff is kicking my ass,a doctor just recommended Horse Chestnut Extract for Varicose veins he thinks are causing my feet to hurt but also not so good.I am losing hope a bit but I know God is with me.Sorry for long post I didn't mean to ramble,I have quite a long story.I am just wondering if there is anybody else out there,I have also posted in British Liver Trust.Anyway God Bless To All and Merry Christmas

[Lynn K]

Hi and welcome

I’m 61. I was diagnosed with hep c in 1990 probably infected in 1977. I treated three times with the old standard of care interferon based treatment for 6 months three separate times but had no response to treatment. After I had hep c for 30 years I was diagnosed with liver cirrhosis in January 2008.

Finally, the new generation medicines the new DAA’s were being approved starting in late 2013. I treated in March 2014 for 12 weeks with Sovaldi and Olysio for 12 weeks. I was not detected at the end of treatment but was found to have relapsed 12 weeks after treatment ended. The next month Harvoni was approved. In November 2014 I started my fifth hep c treatment with Harvoni and ribavirin for 24 weeks. That treatment took and I’ve been free if the virus since I finished treatment in May 2015. I tested again this past year just to be sure and I’m still free of the virus.

Have you tried retreating? When you treated before were you free at end of treatment and relapsed at 12 weeks post or was it later on?

I hope you are not drinking that is like throwing gasoline on a fire if you have hep c and are drinking.

As far as I’m aware there is no genotype 2C just 2A and 2B.

Per the AASLD the current recommendation for a patient with genotype 2 and cirrhosis who have failed prior DAA treatment is “ sofosbuvir/velpatasvir/voxilaprevir” trade name Vosevi. Per the AASLD “ Among patients with genotype 2, 97% (32/33) who received 12 weeks of sofosbuvir/velpatasvir achieved SVR12”

Have yo looked into retreating?

Sorry to hear if your other pains getting old ain’t for wimps that’s for sure

Best of luck

[Bama]

 
  Thank You For The Reply. You are probably right  on the subtext on genotype for some reason that 2C was in my head I can check my records.No I am not drinking I tried that awhile back and found out quickly I can't drink and for the first time in my life in over 50+ years the obsession is gone THANK GOD
 I want to try treatment again and I will if I am awarded my disability,I have exhausted all my financial resources and insurance has been long gone as you know it's really expensive. The pain thing is getting worse and the methadone does help for awhile but wears off and makes for along night,I feel  pretty good about my disability this is an appeal and I have been out of work long enough to qualify.Thanks Again for the reply I hope you are doing well and things are going your way

[Lynn K]

I was working for a large employee when I treated all those times. I did have to fight a bit with my insurance for the second round with the DAA’s I remember asking the customer service rep if they want me to die or need a liver transplant and then have to take anti rejection drugs for life. But eventually I was approved and only had to pay $5 per refill for the Harvoni. Crazy stuff it costs $1250 per pill more than gold.

There are some people who have luck getting prescriptions from India for I think $1000.00 for twelve weeks of Harvoni maybe some of the other meds too.

Best of luck hang in there man

[Bama]

 
  Thank You For The Reply.I hope to seek treatment if awarded my disability,I have been told that treating the virus will at least slow down the progression of my Cirrhosis.I remember when I was treated with Diclenza & Sovaldi around 5 or 6 years ago it was $600 or so per pill but I was able to receive help through the pharmaceutical companies.I was supposedly undetectable during the time of all this by the meds and some herbs my Sugar had me taking,the meds didn't really agree with me so I stopped taking them and she got me on a variety of herbs and they worked. "It's a miracle" the Gastroenterologist said and wanted to know what I was taking herbally as I was told not to mix herbs w/ the meds.Anyway I gave my Sugar a kiss,myself a pat on the back and went back to my "Usual Lifestyle" you know the good one some of us believe is the only way to live I got sick as all get out eventually and my Hep C progressed to stage 3 Cirrhosis w/ Severe Steatosis,Bridging Fibrosis,and got to experience Ascites and several other fun symptoms I had heard of and was warned of.I was close to Esophageal Varices and some other stuff I was told but I was fueled with booze and great narcotics and I was working most of the time doing what I had always done.I don't know how I got away with it,I was never let go from my work as a Pipe Fitter & Plumber (37 years) and I even found time to become a CPT,PES,& CES Fitness Man just cause I liked to train and "Take care Of Myself" I was a real mess,I am blessed to be alive.By The Grace Of God I Go and I have A Loving,Beautiful,Wonderful Woman in my life that has stuck by me she has literally saved my life.I am sober now,have been for awhile,I am on 105 mgs.of Methadone daily as it helps w/my pain and it got me dry and helped me not to use.The methadone doesn't hurt my liver and it really helps me with my pain.I know people disagree with me about the use of narcotics because of hepatic encephalopathy but I am much sharper now that off booze and recreational drugs.I have rambled long enough but this forum and others have been helpful to me,and I enjoy them.I am not out alot nor am I into alot of social media stuff but I have gained much knowledge,hope,and experience from others like me with similar experiences.I am an open book when it comes to extending a hand to others when they are struggling as people have to me,I never thought this would happen to me.I am happier now than I ever have been,God is GOOD.Once Again Thank You,Merry Christmas & Happy New Year To You and Your Family.God Bless

[Lynn K]

Did you complete the Sovaldi Daklinza treatment? We’re you tested at the end of treatment and at 12 weeks after completing treatment?

I did 12 weeks with Sovaldi and Olysio and was not detected at the end of treatment which is common for almost everyone. The only way we know treatment has worked is the 12 week post test to make sure no trace amounts of the virus were present. Firme 12 weeks after finishing treatment I was found to have relapsed and the virus had risen back to detectable levels.

I was diagnosed with cirrhosis in January 2008. I developed edema that summer. I also had a small amount of ascities visible on ultrasound. In 2012 on my third upper endoscopy I was found to have grade three esophageal varicies so I underwent four banding sessions over the next four months to eradicate my varicies to prevent a life threatening bleeding event.

I want successfully treated until three years later when I next treated with Harvoni and ribavirin for 24 weeks.

By curing hep c we stop the progression of liver damage unless we have other things causing liver disease like drinking alcohol, being overweight, taking medication that are known to harm the liver and  also if we have other factors like autoimmune hepatitis of other illnesses that attack the liver.

Herbal “medicines” have shown little to no effect on hep c and liver disease. Some in-fact can be harmful so use caution in taking herbal meds.

For those of us with cirrhosis with cure of hep c some have even seen regression in their fibrosis scores. We still need to be watchful with blood testing and ultrasound every six months to look for early signs of HCC as we remain at risk for liver cancer even though we no longer have hep c. But with cure even our risk of liver cancer is also greatly reduced.

Hope you get to feel better and have a great holiday season.

[Bama]

  Thank You Lynn K for your replies. No I did not complete the medical treatment,the meds didn't agree with and I swear the herbs my Sugar had me taking at the time really worked.I only took the Diclenza & Sovaldi in for around 2 months,I do feel that if I had have taken it for the correct time it would have worked and I feel it was a major player w/ the herbs for me showing up undetectable.I don't think herbs would help me now as a matter of fact some stuff that was a staple for me I no longer take cause it makes me feel bad.I have good days and bad days Do You? I am truly blessed I really lived flying high for along time and I feel I contracted the Hep C Virus probably in the mid or late 70s.I had Hepatitis B one time and went into a Hepatic Coma according to the Drs.that took care of me and saved my life. I had very strong acute symptoms with that bout and the shot the Dr. gave me caused a hematoma and my left leg atrophied for awhile,it's funny I can still see the difference in my legs.I am so glad I don't drink anymore or use the drugs,Thank God  I was given the "Final Warning". I am the cause of all my health problems and I do pray I will be able to get some relief with the virus.Well I did it again rambled on and on,Merry Christmas & Happy New Year God Bless 

[Lynn K]

Almost everyone is not detected for the virus at week four of treatment and their liver enzymes return to normal range. That is the hep c meds doing that. But being not detected at four weeks is not the same as zero virus it only means the virus is lower than the tests ability to detect the virus. Those of us With liver disease are more difficult to treat so it was important for you to have finished the 12 weeks. But that’s water under the bridge now.

I had esophageal varicies In 2012 that needed banding because of my cirrhosis and have some amount of edema (lower leg swelling) also but otherwise I feel fine working full time and taking an occasional class at the local community college. So yeah I feel pretty good most of the time. I likely contracted hep c in 1977 or 1978. I learned I was infected in 1990 when I donated blood.

Best wishes to you

[Bama]

 
  Thanks Again ,I feel encouraged by your life I guess I should just be able to return to work. I don't have Esophageal Varices nor have I had any bleeds,I have had Ascites and I experience edema.Don't know why I am in the pain I am in but Methadone takes care of that for awhile.I  guess I will be denied for disability because you sound like you were feeling bad.I do still have the virus but have no means to treat it,I guess I will return to work I make really good money just have been advised I was getting sicker by Physicians and I felt that my feet would be a problem.How can I get treated? Am I going to have to get insurance? Thank You Lynn K   

[Lynn K]

Well at a guess of what would likely be you next treatment option I’m assuming you are genotype 1 would likely be Vosevi which costs $890 per pill; the cost of a 12-week course of therapy is $74,760. Some were looking overseas to India for generic forms of Harvoni which I believe cost about $1000 for a one month supply. I’m not sure if there are generic forms of Vosevi available yet and at what cost or if that is what your doctor would prescribe for you.

If you have advanced liver disease you really need to be under the care of a hepatologist and have frequent testing done so that would mean it would be a good idea for you to have insurance. I guess if you can afford the meds without insurance otherwise I expect you will need to have some kind of medical insurance to get treatment.

My 24 weeks of Harvoni were covered by my insurance through my employer. With the Giliead Pharmaceuticals copay assistance I paid $30 dollars. If not for insurance my treatment would have cost $189,000.00

Basically if you cannot work you may possibly qualify for disability. It can take a long time and at the end you still may not qualify.

 “ Medically Qualifying for Benefits with Liver Disease
Most liver disease applicants who get approved for benefits meet a listing in the SSA’s Blue Book.

This manual, which is used by physicians and claims examiners alike, contains listings for common disabling conditions. Also outlined in the manual are the medical evidence requirements necessary for proving the severity of your condition, though these details can be difficult to understand without a doctor’s help.

Your doctor can help you determine if you’ll qualify through the Blue Book. You’ll need your doctor to coordinate with the SSA regarding medical records and other requests for information throughout the disability review process too, so it’s best to get him or her on board even before submitting an application for benefits.”

From the SSI Blue Book

“ 5.05  Chronic liver disease,with:

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A. Hemorrhaging from esophageal, gastric, or ectopic varices or from portal hypertensive gastropathy, demonstrated by endoscopy, x-ray, or other appropriate medically acceptable imaging, resulting in hemodynamic instability as defined in 5.00D5, and requiring hospitalization for transfusion of at least 2 units of blood. Consider under disability for 1 year following the last documented transfusion; thereafter, evaluate the residual impairment(s).

OR

B. Ascites or hydrothorax not attributable to other causes, despite continuing treatment as prescribed, present on at least 2 evaluations at least 60 days apart within a consecutive 6-month period. Each evaluation must be documented by:

1. Paracentesis or thoracentesis; or

2. Appropriate medically acceptable imaging or physical examination and one of the following:

a. Serum albumin of 3.0 g/dL or less; or

b. International Normalized Ratio (INR) of at least 1.5.

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OR

C. Spontaneous bacterial peritonitis with peritoneal fluid containing an absolute neutrophil count of at least 250 cells/mm3.

OR

D. Hepatorenal syndrome as described in 5.00D8, with one of the following:

1. Serum creatinine elevation of at least 2 mg/dL; or

2. Oliguria with 24-hour urine output less than 500 mL; or

3. Sodium retention with urine sodium less than 10 mEq per liter.

OR

E. Hepatopulmonary syndrome as described in 5.00D9, with:

1. Arterial oxygenation (PaO2) on room air of:

a. 60 mm Hg or less, at test sites less than 3000 feet above sea level, or

b. 55 mm Hg or less, at test sites from 3000 to 6000 feet, or

c. 50 mm Hg or less, at test sites above 6000 feet; or

2. Documentation of intrapulmonary arteriovenous shunting by contrast-enhanced echocardiography or macroaggregated albumin lung perfusion scan.

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OR

F. Hepatic encephalopathy as described in 5.00D10, with 1 and either 2 or 3:

1. Documentation of abnormal behavior, cognitive dysfunction, changes in mental status, or altered state of consciousness (for example, confusion, delirium, stupor, or coma), present on at least two evaluations at least 60 days apart within a consecutive 6-month period; and

2. History of transjugular intrahepatic portosystemic shunt (TIPS) or any surgical portosystemic shunt; or

3. One of the following occurring on at least two evaluations at least 60 days apart within the same consecutive 6-month period as in F1:

a. Asterixis or other fluctuating physical neurological abnormalities; or

b. Electroencephalogram (EEG) demonstrating triphasic slow wave activity; or

c. Serum albumin of 3.0 g/dL or less; or

d. International Normalized Ratio (INR) of 1.5 or greater.

OR

G. End stage liver disease with SSA CLD scores of 22 or greater calculated as described in 5.00D11. Consider under a disability from at least the date of the first score.”

[Bama]

 
  Thanks Again Lynn K,I really appreciate all your correspondence. I have seen all the information you sent.I have my Disability Appeal Hearing set for January 23rd 2020,
  I was denied my first time which sadly is usually the case for most unless it is something deemed catastrophic.I will have been out of work for 19 months at that point,it's been tough.I am not homeless,I have a car and I have more wants than needs. I have worked my whole life really and I have sufficient funds in my SSI account,I should be able to get between $1700-2000 a month.What I am really seeking is some form of insurance Lynn K,I had to let mine lapse for monetary reasons and when I reapplied I am not eligible because I am not employed.I have reapplied as they hound you on the internet but it's always the same No Job - No Insurance! I have been denied for Medicaid as well.I am not complaining I am merely trying to seek the resources that are available,MY RESOURCES. I get call from others in my trade all the time about working in my trade,I have been a Journeyman Pipe Fitter & Plumber all my life and have made a good living and I enjoyed the work.Lynn K I honestly don't know that I am capable of working as hard as I use to and it's hard to admit my pride often get's in the way.I suppose I could always try something else but I feel that if I am gonna have to work than I should work at my trade as I am skilled at my job and the earning capability is there.I am having to convince myself that I can't work at a job at all my hearing,if they ask me can I do something else.The Vocational Expert in my fist case felt with my experience and knowledge I could do something else similar but his suggestions
were harder work than what I normally did and I am a good hard worker I don't go to work to socialize,I work you are supposed to right ? I will be so glad when this is over it's been quite a experience,I never imagined this was going to happen.I believe God has a plan and that is good enough,I have Faith.I will be 62 in 2022 and I had planned to retire then unless things were going really well with employment and I wouldn't mess anyone up that hired me by retiring.Lynn K I am Blessed and Fortunate more or less so than others that are in similar circumstances like me.Your correspondence has been awesome Thank You So Much,I get more info and knowledge from reaching out like this tan anything else,I hope I am not bothersome,if so I apologize.I am at a crossroads in my life I suppose and I just know everything will be like it's gonna be and what is right for me.Not Always Just Perfect and All Pretty But Right.I feel really good at times and I am Happy and Joyful most of the time but sometimes I feel really bad,I guess you know what I am talking about.Hey Lynn K you really have been a Saint this is what I am talking about when it comes to getting help and support through these forums.God Bless 
   

[Lynn K]

Can you get insurance through the ACA (affordable care act) also called Obama care by some? We still have it in my state of Washington. Too bad there are those working against this but it is what it is.

Thanks for your kind words just trying to pay it forwards all the help I’ve received from others who were there before me

[Bama]

 
  I can't get the insurance because I am not employed.I did fill out an application the other day and I got some sort of message but in the end it's the same no job no insurance no.I use to have that insurance Lynn K and it was good deductible a little high but it was insurance. Went to Dr on Wed, he put some new information that might assist me and he wants to help me get treatment for my Hep C.That would be good, I am just gonna wait out this hearing in Jan. and go from there,I don't know if I can work like I did before.God has a plan I know. Thank You for Reply Merry Christmas and Happy New Year God Bless

[Lynn K]

Ok best of luck happy holidays

[Bama]

 
  Same To you Lynn K.I will let you know how I make out with my hearing if you want.
  I really think if I can get treated for my Hep C it will help with all my current health issues and I know I will definitely feel better.Merry Christmas & Happy New Year.

[KimInTheForest]

Good luck to you Bama! I know I am stepping in late to this conversation. But just wanted to say, I hope you find some way to get the drugs, so that you can be cured of Hep C. 12 weeks of daily pills, and you will be rid of this for good! It really should be possible for you to get the Hep C drugs in the US - no matter what the insurance hurdles are. But there are also pipelines to get generic versions of these drugs mailed from overseas - usually at 1-2% of the price charged in the US. Many people have gone that route too.

If you google "FixHepC" you should find the website that is the most used for this purpose or purchasing the HCV drugs generically. The service was started by an Australian doctor who was frustrated that his HCV patients could not access the new drugs. The service has been available to people worldwide for several years now.

Wishing good fortune to you in 2020, Bama!

kim

[Lynn K]

Thanks for the additional info about fixhepc Kim. I didn’t have to go that route so don’t know much about those options

[KimInTheForest]

I was glad to see that this website service for the generic HCV drugs is still going. I hadn't checked it for a while. It seems to now be offering options of Epclusa, Harvoni, or Sovaldi/Daklinza. Australian Dr. James Freeman started this and is still running it. It is legit. He is running it as a clinical trial, which allows him to mail these generic drugs to anyone in world. Patients pay, but a modest amount - about 1-2% of North American price.

In case anyone is looking for the actual link: https://fixhepc.com/redemption-etrials

Thanks for the additional info about fixhepc Kim. I didn’t have to go that route so don’t know much about those options

[Bama]

   Thank You For The Reply.I am waiting to see if my new Dr. I am going to can treat me.I go back to him in a week,otherwise I am waiting on disposition of my hearing.
  I will check out the site Thank You.

[KimInTheForest]

Good luck Bama!

[Bama]

 
  Thank You Kim. I checked out the site you sent me, nice knowing options,God Bless