I was diagnosed with Hep C 22 years ago but only became ill in the last 6 months. My docs say that I am not eligile for the new cocktails because of the type of Hep C I have. Have been through tests and more tests and I Think that I may start Interferon in the next few months but I am terrified. A close friend of mine died 6 months ago from the treatment and I feel like my docs downplay the side effects. "Sure, you can go to work, live normally." Not what I am hearing from people who have undertaken treatment.
As Laurie Anderson said:
".......Lou was sick for the last couple of years, first from treatments of interferon, a vile but sometimes effective series of injections that treats hepatitis C and comes with lots of nasty side effects. Your comments and advice are most welcome
My advice would be to first find a doctor that has a clue and next expand your researching as Interferon does make some sick while treating. In all the years learning about Hep C dying from treatment is never heard of unless ones liver is to far gone. Now dying because one didn't treat is sadly all to common.......... Good luck
The current tx regimen is a triple therapy unless your doctor does one of the other txs but either way they all involve interferon. Right now there are big studies going on with more effective drugs that dont involve interferon. RibaVirin is the other drug also associated with big side effects. Find the ION 1, 2, and 3 studies on this site. That is the one I am in. It uses two drugs that target specifically the Hep C virus. It seems to work against all genotypes with 1a and 1b being the most common. I have had this for 35+ years and havent been sick but my biopsy was slowly climbing in grade (G2 stage1). cirrhosis start at grade 3 and 4. I used a combo therapy for only 8 weeks and some were for 12 weeks in the ION3 study. The prior studies were for longer times 12-24 weeks. They found that the drugs were so effective at shorter durations that they cut the tx down to 8 and 12 weeks. I am 12 weeks out and still virus free. Next checkup is at 24 weeks. Of course these newer therapies wont be out until later this year or 2015. I held out for better txs since the failure and relapse rates for current txs were high. People do have success with the current tx regimen but the side effects can keep you from working. I took ribavirin in my study but the side effects were not that bad because of the short duration. I would look for studies and see if you can get into one. Go to hcvsupport.org it is a great site with a lot of info and good forums with people who have HCV. Good luck and remember that tremendous progress is being made in tx for this disease.
In order to better assist you with any of your inquiries, we need to know what genotype (1a or b, 2,3,4,5, etc) you are, what the staging of your liver is etc.
This will assist us to advise you as to what treatment is currently available for you, and the possibility of waiting for new Interferon free treatment will all rely upon the state of your liver.
Have you had a biopsy? MRI? Fibroscan? Do you know your iL28 genetic marker? (lets you know what your response to treatment would be CC,CT,TT), and a Metavir Score which grades the activity of the virus in your body (A1-3), and your F score (F0-4) which is your Fibrosis Score.
Are you seeing a hepatologist/gastroenterologist? You need to see a specialist that knows all about current treatments and what is in the pipeline for your type of HCV. If you don't get any satisfactory answers from your medical team, find another as can-do-man said. It is imperative that you have a doctor who is going to share all information with you, and you understand him. So saying, it is also up to you to find out as much as you can about treatments and their effects, as forewarned is forearmed.
And what exactly did your friend die of, the one you said died from treatment. You need to find out, because it is exceedingly rare from anyone to die from the actual treatment.
And finally, here at the forum we have all treated, a lot becoming cured (SVR), some having done 3 or more treatments over the years. Some have failed, but are waiting for new treatments. We are able to help you with most of your inquiries, but as I said at the top, we can't really help you unless we know some results of your bloodtests/other tests.
I forgot to add that whether you will have trouble working depends a bit on what treatment you will go on.
Some people continued to work as builders and brickies etc all the way through treating, whilst others have had a harder time of things.
My doctor plans to use a combo: C genotype 1 is to be treated with three drugs: pegylated interferon, ribavirin, and a protease inhibitor.
My friend died because his blood plate levels were Way too low but he was reluctant to stop the treatment because he could see that the Hep C was being eradicated. When he finally stopped treatment, his Hep C came back with a vengeance and he had damage to his kidneys, liver and other vital organs. He died when he was just 54.
I am, indeed, seeking a lot of information from many different sources. Just completely discouraged by how Western medicine looks only at the liver and the disease without accounting for other important factors like nutrition, mental health and overall wellness. For example, the day I received the bad news that I had chronic liver disease, I immediately went on a cleanse - giving up meat, dairy, sugar, gluten, alcohol (of course) and Advil (that I miss a lot!) Within 3 days, my edema was gone and after 2 weeks, my acites had diminished. Concerned that if I feel this bad already, how will it be to multiply that exponentially? I mean, it's great to stay active but if you feel ******, you're not usually looking forward to a workout. Thanks for your comments, I look forward to learning from you (the experts) about the things that the docs don't want to talk about
By the time you start treatment, which incidently is the ONLY way to be cured of HCV, (unless you are one of the 25% who will spontaneously cure it,) it's a little too late to be thinking about what we could've done in the past to help ourselves get healthier. It is the here and now.
So saying, WE need to take control of our own bodies and research better ways of eating, living, and caring for our minds and, as you said, general wellbeing.
Most GPs are just that. General Practitioners. They have general knowledge. And as most Gastr/ Hepa specialists have never treated, they don't understand the SX of the drugs.
As for your friend, I can't believe that his Specialist team allowed him to continue on treatment if his platelet levels were so low. I have suffered from anaemia throughout treatment, but at no time has my team allowed it to get dangerously low.
It seems that you will be taking either Victrelis or Incivek as the PI, along with Interferring and Riba. Let us know when you know, and we can offer advise from across the world as to how to manage any SX etc.
You will need to go to a dentist before you treat, as there may be some oral issues with treatment, and also the Eye Specialist, as some people have vision issues, and it's good to know with regards to both your mouth and eyes, what was going on before treatment, during and after.
Even though treatment can be harsh, and I have had a very hard time of things, to get on the road to being cured is the greatest thing I have ever done. I know my body will never be the same again, post treatment. But, all going well, I will be HCV free forever.
I have 10 weeks left of my 48 weeks of little hell. Sometimes I wondered how I would get through it, wearing me down mentally, emotionally and physically, but I didn't have to work. I couldn't. I just disappeared from the world. I have never had psychological issues, but I can see how this could really wear your mind down, and cause depression etc.
If you have a propensity for depression etc, find a psychologist and get evaluated. If you already take meds for this, keep in mind there may be need to adjust.
I believe the more you own and understand your illness and the treatment's side effects, the more you may find it easy to get through treatment. I think a lot of people go in naive and get a real shock. I know I did.
But I know a lot now.
" I immediately went on a cleanse - giving up meat, dairy, sugar, gluten, alcohol (of course) and Advil (that I miss a lot!) Within 3 days, my edema was gone and after 2 weeks, my acites had diminished. "
If you have ascites and edema it means you have cirrhosis of the liver. Advanced liver disease. You need to see a hepatologist at a liver transplant center ASAP. You may be too ill to treat your hep C as your friend was. Only a hepatologist can determine how advanced your liver disease is and if and what treatment you can tolerate.
Having cirrhosis with ascites you should never eat red meat (it can cause hepatic encephalopathy), you should be on a low sodium diet to prevent fluid build up, never drink alcohol (which is toxic to the liver) and never take Advil.
Advil is a nonsteroidal anti-inflammatory drug (NSAID). In persons with cirrhosis NSAIDs can cause mucosal bleeding in patients at increased risk of bleeding as a result of low platelet counts and coagulation issues associated with cirrhosis and portal hypertension. NSAIDs should be avoided in all patients with cirrhosis because of the increased risk of hepatorenal syndrome (kidney failure is a serious and often life-threatening complication of cirrhosis) and the dire consequences relating to this complication.
Please see a hepatologist (liver specialist) ASAP. They are the only doctor that can help someone with ascites and other complications of advanced cirrhosis. You don't want poor/improper medical care to do what it did to your poor friend.
I know the answers to some of these questions
Genotype 1 a
No biopsy but a sonogram and MRI with dye. Blood tests. Hep B and pneumonia vaccinations, varices ondoscopy scheduled next Tuesday. I have been focusing on Bilirubin levels, ALT and MELD score. (MELD originally 15, a month and a 1/2 later, 11) Ironic that one's MELD score determines where you stand in line for a transplant as well as your prognosis.. I am currently seeing a gastroenterologist but have an appointment with a hepatologist who leads the liver transplant department at a prestigious hospital in my city. My health care provider contracts with them if they get to the stage of talking transplants.
Thanks for your help. It's likely that the other questions you asked are there in my many blood test results but I will send an email to my doc asking for the answers. I feel great having found this forum because it seems I have spent countless hours learning what I can from disparate internet searches
"As Laurie Anderson said:
".......Lou was sick for the last couple of years, first from treatments of interferon,"
Lou first became sick because of Hep C, sadly Lou lost his life because of Hep C........
Ironically, or sadly, the reason I was taking Advil was because my doctors recommended it for pain, insomnia, whatever, despite the fact that I would always remind them that I had a comprised liver and immune system. It's that whole body thing that I was talking about, inability to see the forest for the trees that seems rampant in Western medicine
My husband tried the triple treatment with telaprevir in 2011. He lasted on it 5 weeks as he had cirrhosis. He became seriously anemic and even more ill than he had been. However, even though he stopped treatment he was undetected for Hep C for 8 months. After transplant however, the Hep C virus reappeared. That was 17 months ago. In January, he will have a liver biopsy to see how much damage the virus has done to the new liver. His doctors will then need to decide what next. New treatments that are interferon-free will soon be available for the hardest to treat. We are hopeful that these new treatments will someday be available for him as a post transplant patient.
This article published on Nov. 5, 2013 should provide some hope for you. I think it certainly could be a topic of conversation with your doctors.
So very sorry to hear about your friend. As my husband became severely anemic also while on treatment, based on his experience, I would not recommend anyone with cirrhosis taking on the interferon/ribavirin/telaprevir treatment, especially when new treatments are on the horizon that are interferon and ribavirin free.
As sick as he was, he does not regret doing the treatment for 5 weeks as he was undetected for the virus for 8 months and we'd like to think that helped prevent him from advancing to liver cancer.
I agree with everything that everyone above has said. You've had Hep C for 20+ years, you're genotype 1, and you have advanced Cirrhosis. If you have edema and ascites, your liver is probably decompensated or decompensating (not working well or beginning to not work well). Your doctor has scheduled an endoscopy to check on the state of your esophagus and other parts of your upper digestive tract to see if the portal hypertension that is causing your ascites is also putting the veins in your esophagus and upper digestive organs in danger of bleeding. Hopefully your endoscopy will show no varices. If your MELD is 11 right now and was 15 in the past, that is likely due to whatever medications your doctor has put you on to help your liver out, possibly diuretics or lactulose. nan535 is right, the currently approved triple txs (Interferon, Ribavirin, and a protease inhibitor - either Incivek or Victrellis -) would not be a good treatment for you. If your liver is decompensated or decompensating, the protease inhibitor, either Incivek or Victrellis, could very easily damage your liver further and cause it to fail. As Hector said, no alcohol, no red meat, organic fruits and veggies are best, no medications that are not approved by a hepatologist, no iron supplements, in fact no herbal supplements or vitamins that are not approved by a hepatologist. You need to be seen by a hepatologist in a transplant center, to monitor the condition of your liver, to monitor your labs, and to screen for liver cancer routinely. It may be possible that a hepatologist would be willing to treat your Hep C with one of the new treatments hopefully soon to be approved, but you should only consider that with a hepatologist since you have advanced Cirrhosis. The new treatments for G1s will also include Interferon and Ribavirin, so there is no way around that. Again, I can't stress enough how critical it is for you to be seen by a hepatologist in a transplant center. Yes, it is sad that one's MELD score determines one's place in line for a life saving transplant, but keep in mind there are many, many people with MELD scores anywhere from 16 - 35+ that are much more ill than you are and waiting on the transplant list. There are not enough livers available for all of the people who need them. People need to be tested for Hep C sooner rather than later, and people with Cirrhosis need to be seen by a hepatologist rather than a gastroenterologist.
I am currently taking NO medications whatsoever. The improvements made to ascites and edema I credit to stopping drinking and taking advil + my fairly strict vegan diet. None of these things were even recommended by my doctor but I know a cleansing diet is the first thing someone who was looking at the entire picture would recommend. Looking forward to meeting my Hepatologist next week. I hear she is the best. Thanks for everyone's input
"As my husband became severely anemic also while on treatment, based on his experience, I would not recommend anyone with cirrhosis taking on the interferon/ribavirin/telaprevir treatment, especially when new treatments are on the horizon that are interferon and ribavirin free".
I would like to clarify that statement. My husband had decompensated Cirrhosis at the time he started treatment. He has Hepatic Encephalopathy, ascites, edema, portal hypertension, esophagheal varices, etc.
His treatment was very difficult and left him needing numerous blood transfusions and his kidneys almost failed.
I understand not everyone is at this stage when they are Cirrhotic. So let me ammend my statement to say that I don't recommend this treatment for those who have decompensated Cirrhosis.
Here's what my doc said about the other questions I emailed him:
"You have cirrhosis and portal hypertension. The scoring systems you are referring to are used to determine if there is any scarring and, if so, how severe. They are used only in people who do not have overt evidence of cirrhosis (such as ascites).
You are a Child's class B. We don't routinely use IL-28 testing. Several factors may somewhat increase or lower your likelihood of response to interferon, but not enough to change recommendations regarding therapy in your circumstances"
So looking forward to meeting the Hepatologist next week
They don't treat diseases in the east with herbs, they actually have real doctors...lol. It amazes me people think that the "east" treats serious disease with a collection of "herbs"...ect, This is an assumption I see made over and over again. Not pointing finger at you.
Cleaning up your diet great, Secret insight that the east has that western medicine doesn't posses is not right. It's science it's not voodoo and herbal concoctions.
I understand not wanting to treat with interferon, I don't have any desire to do it. I'm SVR and don't need to do it, but I understand you're concerns.
I only mean the Eastern approach as an adjunct to the Western science, not an "instead of" approach. And I think it makes sense to explore all avenues. Acupuncture, for example, has been around for thousands of years and I have experienced personally its benefits. It won't cure Hep C but it may get rid of or diminish other symptoms brought on by the disease
Essentially your doctor is telling you that you have advanced Cirrhosis. You have portal hypertension, which can lead to many difficult symptoms and/or death. Symptoms which can develop include ascites, which can make it difficult to breathe or walk, edema which can make walking difficult and cause circulation or infection problems, and internal bleeding either from the esophagus or from the digestive tract. Another serious symptom of advanced Cirrhosis is Hepatic Encephalopathy, which causes many cognitive issues, such as confusion, disorientation, falling, sleeping, coma, etc. So, what you really need to understand is that you are at the stage just prior to developing any or all of those serious, potentially life threatening symptoms. There are medications and procedures that can help treat those symptoms, but they will not stop the progression of the liver disease, they will only help with the complications of the symptoms. The only thing that can stop the progression of the liver disease is clearing the Hep C virus.
Good luck with your decisions. This is a pivotal time in your decision making regarding your liver. It sounds like you have a great doctor who understands exactly how serious your liver condition is.
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