The amount of portal hypertension pressure and its resulting effects on the body, depends directly on how advanced the liver cirrhosis is. Meaning the amount of scarring which resists the blood flow through the liver and back to the heart.
The portal vein supplies the majority of blood to the liver. That blood comes from the GI tract and the spleen. When scar tissue in the liver interferes with that blood flow--- pressure can build in the portal vein ("portal hypertension"). Portal Hypertension can cause the spleen to enlarge and varices to form in the GI tract.
---> As the spleen enlarges-- platelets are trapped in the spleen. (The platelet count in the bloodstream falls.) (Platelets help our blood to clot. So as the platelet count falls... bleeding time is increased.)
---> Varices are dangerous because there's a risk that they can burst and bleed (hemorrhage).
Cirrhosis is reversible in some cases of "early" cirrhosis. Compensated class A cirrhosis. Typically it can take many years for the liver to heal after cirrhosis. Each person's advanced liver disease is different so it can't be predicted how long it could take.
NOTE: Keep in mind that even after SVR while there is a reduced risk of developing HCC (liver cancer) a person still is at a higher than normal risk and HCC screening should continue every 6 months or 12 months depending on your provider's protocol.
Good luck with your treatment!
Thank you. I am stage A but did have evidence of an enlarged spleen. I'm of a small spleen and ridiculously sensitive. I am trying to figure out what precautions to take post therapy. I also have to inform my PCP of potential reduction in work hours. To be honest, it will not even be until mid-October when I hit the three month and you are considered cured by a treatment know one knows much about, no further research will be done because Gilead had moved on with their own version, so it's a really weird situation. My liver doc essentially told me he is done with me having exhausted all treatment options and I should follow-up with my PCP for disability requests, post-treatment testing and monitoring, etc. . . So, I would be lying if I ddi not admit to being scared and confused. Not many doctors even know this non-FDA approved experimental treatment!
I have another question, since I am in the wary stage, if I am still in remission should I still be careful with stress and take it esy as I feel my way through all the side-effects? (Joint pain, brain fog, the cirrhosis which really set in the beginning of this year, and post interferon syndrome related side-effects...fibromyalgia, fatigue, body pain and stiffness..?) I can't believe for every precaution and proactive intervention I underwent since 1994, that I have more problems? I know if I keep the virus in remission I have a life, but my life has been drastically altered. It is really hard to reconcile all of this. I am on anti-anxiety med (low dose klonopin & laminal, low dose) to help, but my God, I just am not used to being or feeling so not me, and not so great...naps in the middle of the day? Never in my life until my third and final interferon fiasco in 2012, and now the "unknown and will never be know experimental expensive drugs.
I actually hate that I am complaining and concerned because this all might have saved my life...then back again to quality of life and how to safely deal. I am so sorry I am rambling--another cognitive change since taking the anti-vitals and onset of cirrhosis! (Dyslexia too!) I am a professor who teaches thinking and writing. Hence my concern about how much should I be doing? My liver doctor just says, treatment has ended, I know nothing to tell you as nothing is known. Any other suggestions? I have to pass all this on to my PCP. Any academic references or articles would help too? I am sorry to bother you, I hope this helps others too.
Q: “I am trying to figure out what precautions to take post therapy.”
The same precautions as pre therapy get enough rest, exercise as you doctor allows, limit your salt intake, eat a “Heart Smart” diet. Make sure any medications you take are safe consult with your doctor.
Q: “ I also have to inform my PCP of potential reduction in work hours.”
Do you have symptoms why are you anticipating a reduction in work hours?
Q: “no further research will be done because Gilead…”
Research is on going for the Sovaldi Olysio combo.
Q: “my liver doc…”
Are you seeing a Hepatologist at a liver transplant center?
For follow on monitoring post treatment and hopefully cure of Hep C having you PCP monitor you doesn’t seem to me in my non medical opinion to be unusual especially as you are compensated class A cirrhosis. If you have a change in your condition that is when it would be time to go back to the specialist.
Q: “Not many doctors even know this non-FDA approved experimental treatment!”
The treatment is not experimental it is available by prescription. The use of Sovaldi /Olysio is an off label usage but not experimental. It is the recommended treatment for many depending on their situation (genotype, previous treatment response, and if cirrhotic or not). Yes doctors who are not liver specialists probably are not familiar with the treatment if your liver specialist is not I would suggest seeing another doctor.
Q: “should I still be careful with stress and take it easy as I feel my way through all the side-effects?”
Yes as everyone should. If your body says no listen to your body. But exercise as tolerated and as approved by your doctor is recommended.
Q; “I am on anti-anxiety med”
Are you seeing a counselor for talk therapy? That could help with your anxiety symptoms and possibly with some of your physical ones.
Q: “now the "unknown and will never be known experimental expensive drugs.”
Studies continue on this combo of meds not sure what you mean by will never be known results of the clinical trials are available.
Q: “My liver doctor just says, treatment has ended; I know nothing to tell you as nothing is known”
What are you wondering about? Perhaps if you posted that as a single question. Will you achieve SVR? You will find out 12 weeks post treatment. Will your health improve if you eradicate the virus? No way to know everyone is different only time will tell.
I hope this helps a little
I hope the posts were helpful to you, Dbz. It actually answered some questions I had, so thanks for the posting. Sorry for your ongoing worries. Lynn had some good advice on this. I hope the best for you, as for us all.
Your situation is very complex, as it is for all people dealing with cirrhosis and its sometimes debilitating symptoms and risks, but I will try to make a few points that may be helpful.
Compensated cirrhosis or what is sometimes called Childs Pugh Class A cirrhosis covers both those with early cirrhosis, meaning those who do not have any or little portal hypertension and its effects to those with portal hypertension including its typical manifestations such as splenomegaly, varices, possible hepatic encephalopathy and its many other effects.
What you are saying about the treatment is not correct. Sovaldi and Olysio has been submitted to the FDA to get approval for it so it no longer will be off-label and so the people that need all oral treatment will not encounter some of the health insurance issues that some people are having getting the treatment. This is Janssen (the maker of Olysio) money maker in the hepatitis C market. Virtually no one is treating with Olysio any other way (for up to 48 weeks tieh interferon and ribavirin) so they are starting new phase III clinical trials to learn more about the treatment’s use in different patient populations so they can promote this treatment for certain groups of patients in order to complete with Gilead upcoming one pill a day treatment. Without approval they will lose all market share to Gilead and other pharma companies that will be also entering the market soon.
Sadly your "liver doctor" (hepatologist? Gastroenterologist?) either is ignorant about the new developments in hepatitis treatment ("exhausted all treatment options) or not interested in helping you further for whatever reason. Just because he can't or doesn't want to help you doesn't mean there isn't help available to someone like yourself with cirrhosis and may have cured their cirrhosis.
Since you have cirrhosis you should be under the care of a hepatologist at a liver transplant center as you will require ongoing monitoring and possible treatment. As I mentioned whether you are cured or not you will have an ongoing risk of liver cancer and need HCC surveillance for years to come. This is not something your PCP can do. Only a hospital that has a liver transplant center can properly monitor and if need be treat HCC. Make no mistake about that. Even if you are cured of the virus you still have your cirrhosis issues to deal with which don’t go away when the virus does as you have mentioned. The symptoms of early cirrhosis many times can be managed at least to some degree with medications. For example portal hypertension is normally treated with propranolol, nadolol to reduce the blood pressure and prevent varices from bleeding. A proper diet and healthy lifestyle are important for people with cirrhosis if they want to have the best prognosis and help the liver to heal as much as possible. All of these issues can ONLY be addressed by doctors at a liver transplant center. A PCP knows little to nothing about any of these issues and can therefore not help you with them. Of course they should be aware of these issues and the PCP is commonly sent a copy of all medical reports from the transplant center. They may also be able to perform simple tests or other aspects of treatment that don't require the transplant center to perform but any treatment must be approved my the transplant center first as many common treatment or drugs that for most people are benign can be highly dangerous for a person with cirrhosis.
The liver transplant center doctors are familiar with Sovaldi and Olysio and all newer hepatitis C treatment as they are now treating their cirrhotic patients on their transplant waiting list with these treatments in hope that they can prevent some of their patients from needing transplants. Many of those on transplant waiting lists have liver disease that is so advanced that peg-interferon based treatments can be dangerous (can cause decompensation or liver failure) to those with advanced liver disease and even some patients may not be able to tolerate the side effects of ribavirin because they may already have blood level issues (anemia) because of their cirrhosis and its complications.
I am not sure why you mention “post interferon syndrome”? You didn't treat with interferon so these are not something that is relevant to your situation. In fact there are no known post treatment effects of Sovaldi/Olysio treatment and everyone I know that has been cured with this treatment feels better after treating than before they started their treatment.
The symptoms you mention “fatigue, body pain and stiffness” are common symptoms of cirrhosis. Fatigue being the universal symptom of cirrhosis. Hopefully your hep C will be cured and in time you will start feel better as your liver begins to heal itself. While there is no cure for fatigue unfortunately. Many all of us have or have had cirrhosis for many years while we waited for our transplants. As with many serious health issues that are chronic, we have to learn to live and manage our lives as best we can under the circumstances. Thile it is not easy there really isn't any other choice as there is no quick fix for cirrhosis except a liver transplant when the cirrhosis becomes life threatening. Thankful with new treatments liver disease don't have to get progressively worse over time. The liver transplant center can help you learn how to live with your cirrhosis with proper management.
I am sorry to say that your PCP will not be able to help you medically or with knowledge and understanding of the issues you are now struggling with and will only lead to more frustration and feelings of despair. Advanced liver disease is not only a complex illness that effects our whole body physically and can be life-threatening but is also a challenge for many people to mentally live with. My experience is only when people get proper medical care and understand the nature of this illness at a liver transplant center do people feel like they have some control over lives and begin to learn how to live as best they can with whatever limits their illness may impose. I highly recommend finding the liver transplant center near you and discussing these issues with the folks there who work every day with people like yourself who has cirrhosis and is experiencing its symptoms. This is all they do. All the people that work in liver transplant specialize in liver disease and understand the issues you are living with. A PCP or any other doctor can not help you will these physical and emotional issues that are the consequence of living with advanced liver disease. Another help thing that may be available at the center is a support group where you are meet other who are going through what you are or worse (those needing transplants because there liver disease has become irreversible). By talking to other who are dealing with the issues you are you can learn who to best manage the symptoms of cirrhosis as well as realize that there are many others in the same situation as yourself.
Myself and many of my friends have lived many years with cirrhosis and all of its disabling and life-threatening complications before getting our liver transplants as previously (last year) there were no hepatitis C treatment for us with advanced cirrhosis. Luckily that doesn't have to be the case any more but people need to take advantage of what resources are available to make their quality of life as best it can be while the still live with their livers that suffered the damaging effects of hepatitis C for many decades.
I hope you seek the help you need and prevent unneeded suffering from your cirrhosis.
Methodist Center for Liver Disease and Transplantation is one of the better centers in the country.
Hang in there and get the help you need.
Wow, thanks so much for the links.
Re my concerns. Yes, before I started the dual therapy pills in April of this year, I already had fibromyalgia, muscle and joint pain, muscle cramps, fatigue and easily confused, (some of this actually began after my last interferon treatment which I had to stop because of the horrific reaction I had--I never even made it to incivik).
Then, when my symptom got became much worse last Fall. They did the MRI that showed for the first time in 25 years, I had jumped from simple inflammation to active cirrhosis with portal hypertension with an enlarged spleen (that was just with the first stage of cirrhosis). However, never before had I ever had anything beyond inflammation due to stress and some tiny bits of fibrosis. I was a 1.5 on Hep C scale. In a matter of one year, I went from 1.5 to 4 and then over to the Cirrhosis scale-Child's A.
The three things that dramatically changed and continued to get worse up until the treatment began in April 2014, was fatigue, pain and horrific brain fog with memory loss. That is what I had going into treatment. The only thing that got a bit better while on treatment was I did have more energy, but my brain fog and ability to think got much much worse. I couldn't talk without a stutter and could barely make it up and down the stairs.
Add to this I had an accident two weeks before starting the dual pill therapy, and due to that trauma I developed vertigo which is much much worse still. Tests showed I had crystals out-of-place and the ENT dx: "true vertigo with a family history of Meniere's. It is something I am just going to have to learn to deal with. Good thing-if I get stressed my boat ride gets like a storm so I know to slow down. Regardless, walking straight is a joke on bad days and I can laugh at myself.)
Yes, I see a psychologist and psychiatrist and I meditate. Full psyche Dx: ADHD, anxiety due to PTSD (violence & abuse). I was in the Victim's of Crime PTSD counseling single and group therapy (2010). I believe in therapy and meditation over medication. That is why I have managed to stay on only 10mg of Klonopin and 25 mg of Lamictal, period. I have 10 mg of methadone per day to deal with pain--it has helped, and when things are really bad I get a heating pad and just lay down.
So, I know the final interferon treatment left residual problems: fibromyalgia and brain fog. The cirrhosis added fatigue and memory issues. I practice a full liver friendly diet...no sodium (keep it to 250 or less) I'm a total vegetarian. I also found out which vitamins and minerals were not liver-friendly and cut them out. I am 5'6" about 120lbs. I gained some weight while on treatment, but also added water retention to the mix?
Post treatment, my thinking is somewhat clearer (writing this is a miracle!). The reason I would like to have a reduction in hours for this Fall is that I work in an incredibly stressful job. My idea was to cut out the most stressful activities and then possibly try to get back into yoga...pending crazy vertigo, but there are loads of postures that do not require one foot and I think it would help. I am really not changing my diet until after October when (and if I am still in remission), I am told per the treatment protocol, I am "cured--likely to stay in remission."
So, that is my whole story. It was my hematologist who told me because I did a non-FDA approved therapy, that my future prognosis is unknown and that there was no new information to add, especially since the first STARS study consisted of so few patines with too many different variables. And that, is where I am at, and why I asked these questions. I have had doctors refuse to see me because they do not know enough about Hep C and this treatment. I have not been able to find a neurologist or specialist to follow-up with the vertigo. Thank goodness my PCP is taking me back and is willing to work with me. the main thing, I still have all the symptoms I had before treatment. The only noticeable difference is I am thing a bit more each day. I still do not remember two days prior. I can give you milestones, but I can not give you details. I am simply not the person I was prior to the summer of 2012, when I took that last interferon and ribovarin treatment and almost completely crashed. I really wanted to know if cured, will I get better, ever?
I am nervous about stress and putting myself in any harmful environment until I actually feel better and am told the virus is gone. I do not want to bloat up, turn bright yellow and slowly loose my mind and then die. I am doing everything I can to make the best of it. I just did not know about the studies you mentioned and I will look at them...tomorrow because I am actually worn out from typing most of the day (it takes me longer then normal now.)
Does that help you understand my questions better? I really appreciate your help. I am ok with leaving my hematologist and going back to the PCP who can also deal with my vertigo, I actually had no warning that this was going to happen. When your brain is not quite right, it is easy to be totally overwhelmed in a flash and have to think for two days to calm down and try to understand what is happening--I was never like this before. So, another positive, I am learning patience in an extreme way. You have helped tremendously! I will as I said check out the links and articles tomorrow...this much computer time just zaps me and body aches are nuts--I can deal, but not 40 hours per week like this (my job is really 60+ hours per week!)
Thank you so much! dbz