Aa
Please, give me some advise
Was diagnosed last year with Crohns Disease and only because of this was found to have Chronic Hep C and the lowest grade of cirrosis. I was absolutely stunned! Was on loads of meds for the crohns but it didnt seem to improve so I stopped everything. The Crohns has settled down but 4 months ago started getting terrible pain in my joints. The specialist told me to take pain killers - I don't take anything. 3 weeks ago a rash appeared whch is getting worse, it's really itchy. Been to the docs today and going to send me for a blood test, he thinks its to do with my liver. I really feel I can't cope with this anymore. Everyday i wonder if I'm going to die. I can hardly get out of bed in the morining with the pain in my joints and now this hideous rash. The specialist says he doesn't think treatment for the Hep C is a good idea - does that mean he's written me off. I don't have another appointment till April. I don't drink, don't smoke, eat healthily and yet I seem to be getting worse. What can I do? I keep thinking the next stage will be liver failure. What do I tell my daughter? Please, someone what do i do?
.
"Everyday i wonder if I'm going to die." "I really feel I can't cope with this anymore."
You need to pull yourself together as you are over reacting to having hepatitis C. You probably have had it for decades you just didn't know it. Hepatitis C is a curable disease and most people now can be cured. Hepatitis C for the vast majority of people is not a fatal disease as you seem to believe. Millions of people in the US have hepatitis C and live with it every day. Most people on this forum have hepatitis C and many are treating and being cured. You are not going to die of liver disease any time soon according to what you have written. In fact you have no symptoms or complications of hepatitis C or liver disease that you mention.
If you were dying of liver disease you would be have been hospitalized many times during the past year and you would be having symptoms and complications that are life threatening and obvious.
Second, "started getting terrible pain in my joints" and a skin "rash" are NOT symptoms of hepatitis C or liver disease. So you must have another health condition that is causing these symptoms.
What does "the lowest grade of cirrhosis" mean?
How was this determined?
By what type of doctor?
First - get the real facts. Then you can decide what you need to do and we can direct you to the appropriate options once you see a competent doctor who understands hepatitis C and runs all the proper tests and gives you a diagnosis and how advanced your hepatitis C and liver disease is.
"What can I do?"
Go see a doctor who can diagnosis what is causing your health problems.
AS far as your hepatitis C and any liver disease you may have you need to see a Gastroenterologist or Hepatologist. Get a referral from your primary doctor.
"I keep thinking the next stage will be liver failure."
As I said you have no signs of liver failure so there is no reason to worry about it.
"What do I tell my daughter?"
You don't know what your true health situation is. The the facts first by getting diagnosed. Once you know your medical conditions then can think about who are are going to tell about it.
Good luck.
When you get the facts about your hepatitis C and any possible liver disease then we can help you.
Hector
You need to pull yourself together as you are over reacting to having hepatitis C. You probably have had it for decades you just didn't know it. Hepatitis C is a curable disease and most people now can be cured. Hepatitis C for the vast majority of people is not a fatal disease as you seem to believe. Millions of people in the US have hepatitis C and live with it every day. Most people on this forum have hepatitis C and many are treating and being cured. You are not going to die of liver disease any time soon according to what you have written. In fact you have no symptoms or complications of hepatitis C or liver disease that you mention.
If you were dying of liver disease you would be have been hospitalized many times during the past year and you would be having symptoms and complications that are life threatening and obvious.
Second, "started getting terrible pain in my joints" and a skin "rash" are NOT symptoms of hepatitis C or liver disease. So you must have another health condition that is causing these symptoms.
What does "the lowest grade of cirrhosis" mean?
How was this determined?
By what type of doctor?
First - get the real facts. Then you can decide what you need to do and we can direct you to the appropriate options once you see a competent doctor who understands hepatitis C and runs all the proper tests and gives you a diagnosis and how advanced your hepatitis C and liver disease is.
"What can I do?"
Go see a doctor who can diagnosis what is causing your health problems.
AS far as your hepatitis C and any liver disease you may have you need to see a Gastroenterologist or Hepatologist. Get a referral from your primary doctor.
"I keep thinking the next stage will be liver failure."
As I said you have no signs of liver failure so there is no reason to worry about it.
"What do I tell my daughter?"
You don't know what your true health situation is. The the facts first by getting diagnosed. Once you know your medical conditions then can think about who are are going to tell about it.
Good luck.
When you get the facts about your hepatitis C and any possible liver disease then we can help you.
Hector
Hi Snape,
Sorry to hear of your recent diagnosis. In order to fully understand your situation, terminology is important. You mention having ‘lowest grade of cirrosis’. Is this accurate, or do are you referring to a certain stage of fibrosis? Sometimes patients understandably confuse fibrosis and cirrhosis.
Even if you do have stage 4 cirrhosis, it’s unlikely to be your demise in the very near future. Are you currently dealing with overt signs of end stage liver disease such as ascites, variceal bleeds, encephalopathy (brain fog) etc? These can be classic features of decompensated liver disease and should be managed by a qualified liver specialist such as a hepatologist.
Generally pain relievers are okay with HCV, unless you are indeed cirrhotic; at that point the doctor might limit you to acetaminophen or acetaminophen/narcotic analgesic. Why are you not using pain meds when ordered by your doctor?
Folks in here aren’t going to be able to offer you a prognosis, but your doctor can surely give you some idea of where you stand. Good luck to you, take care and let us know how things go-
--Bill
Sorry to hear of your recent diagnosis. In order to fully understand your situation, terminology is important. You mention having ‘lowest grade of cirrosis’. Is this accurate, or do are you referring to a certain stage of fibrosis? Sometimes patients understandably confuse fibrosis and cirrhosis.
Even if you do have stage 4 cirrhosis, it’s unlikely to be your demise in the very near future. Are you currently dealing with overt signs of end stage liver disease such as ascites, variceal bleeds, encephalopathy (brain fog) etc? These can be classic features of decompensated liver disease and should be managed by a qualified liver specialist such as a hepatologist.
Generally pain relievers are okay with HCV, unless you are indeed cirrhotic; at that point the doctor might limit you to acetaminophen or acetaminophen/narcotic analgesic. Why are you not using pain meds when ordered by your doctor?
Folks in here aren’t going to be able to offer you a prognosis, but your doctor can surely give you some idea of where you stand. Good luck to you, take care and let us know how things go-
--Bill
Crohn's disease can go into remission and then flare up. It sounds like you're having a flare up after 4 mos. of remission. Maybe your doc could recommend something different to take for your Crohn's this time.
You don't say what genotype of HCV you have but I'm going to assume it's either 1a or 1b. The current SOC includes a interferon alpha which is a general immune stimulant. Since Crohn's is an autoimmune disease it might become even more active if the immune system is stimulated with interferon.
There are treatments in clinical trials that aren't using interferon but those probably won't be approved for 3-5 years. What exactly is the grade and stage of your liver biopsy?
Hang in there and get help for depression if you need it.
Take care, Sherry
You don't say what genotype of HCV you have but I'm going to assume it's either 1a or 1b. The current SOC includes a interferon alpha which is a general immune stimulant. Since Crohn's is an autoimmune disease it might become even more active if the immune system is stimulated with interferon.
There are treatments in clinical trials that aren't using interferon but those probably won't be approved for 3-5 years. What exactly is the grade and stage of your liver biopsy?
Hang in there and get help for depression if you need it.
Take care, Sherry
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