I battled a pretty serious drug problem through my college years and finally got sober around 25 years old. I decided to get tested for any contracted diseases and was diagnosed with Hepatitis C (can't recall which kind but not the tamer kind). At the time, my doctor told me that that the best thing for me to do was stay sober, get healthy and continue to get regular blood work to keep an eye on the condition. In alot of ways I think HEP C saved my life because it gave me a new persepctive on my own mortality and I have been sober now for almost 5 years. About 6 months ago, ongoing shoulder pain, which I believed was related to weight lifting brought me into an orthopedic doctor. I had expected him to tell me I had bursitis or a torn cuff but he told me I had arthritis? -OK, so I could see that, God knows I have played alot of sports, lifted alot of weights and bounced cars off more than a few guardrails and telephone poles.
I recently went in for bloodwork with my doctor and he told me my liver enzymes are up as well as my viral load so he is referring me to a Gastral Intologist for a review to see if I should begin HEP C treatment. In the last month I have been having a nagging persistent pain in my right hip and it feels alot like my shoulder, so I have an appointment with my regular doctor to refer me back to the orthopedist to check that out. The joint pain stuff has me worried because I am young and have always been strong and athletic and I love using my body hiking, running and of course sex. I believe physical activity is one of the gifts of my clean and sober life. Oh yeah; I am also being treated for mild anxiety and sleep issues with non-narcotic meds...
So that's the history. Now here are my questions.
How sick is sick enough to do this from your perspectives, the patients, because beside the joint pain I feel ok?
Is the treatment as bad as you guys all say?
WIll the treatment permanently change my lifestyle?
Is my joint pain because of my HEP C?
Will the treatment make it worse?
WIll I be able to go to work/ take walks/ travel/ make love?
If you guys were me would you just tell them to shove the treatment up their *%$, or is that as ignorant as it sounds?
Mostly, I feel too young to be complaining about joint pain and scared the reprecussions of my actions will forever haunt me. -Does anybody have any good news?
Make a list of questions to ask the GI doctor. Your treatment depends on your Geno type and results of a liver biopsy if given. When do you see the GI doctor? When you know the meds you will be taking, you can research them on the internet and look at the side effects. My daughter is 20-years-old, and yes, the side effects are real. People have different side effects so they vary from person to person. I would definitely check out the pain in your shoulder and hip by seeing an ortho to begin with. You want to review a Hep C friendly diet as well. As I see it, it's just eating the way we are supposed to eat anyway. Yes, there is good news. There are newer drugs now that are available and there are some in the works. Also, there are always people on this forum to answer questions you may have. It helps knowing that someone else understands this so you will not feel alone. Having a support system helps greatly. I am sure there are more people that will offer there advice because they are better experts than I. Best of luck and may God bless you.
-How sick is sick enough to do this from your perspectives, the patients, because beside the joint pain I feel ok?
First of all, Hep C does not just go away,it has to be treated.I have lived with Hep C for 27 years now and lived a full lifestyle of Fun,Work my Butt off and pretty much did whatever I wanted..I just started feeling the effects of Hep C a couple of years ago.
-Is the treatment as bad as you guys all say?
Everyone responds differently to treatment.I just finished a 12 week Clinical Trial and I had very little to none side effects.
-WIll the treatment permanently change my lifestyle?
If you do not TREAT. It will change your lifestyle eventually and cause damage to your liver.You need to find out how severe your HepC is..
-Is my joint pain because of my HEP C?
I don't think so,but I'm no doctor..
-WIll I be able to go to work/ take walks/ travel/ make love?
Like I said I have had HepC for 27yrs and it didn't effected any of those things up until now..
-If you guys were me would you just tell them to shove the treatment up their *%$, or is that as ignorant as it sounds?
My answer: ignorant as it sounds..It might be decades down the Road for you,but Eventually you will need to treat.Why wait until you get worse and possiblly have Cirrhosis (IF NOT TREATED) ..JMO
"How sick is sick enough to do this from your perspectives, the patients, because beside the joint pain I feel ok?"
First, you will most likely need to do treatment at some point. Second, you need to get a liver biopsy (or something equivalent) to determine the extent of liver damage you have. When to treat depends on many factors: amount of liver damage/fibrosis stage, extrahepatic manifestations of the Hep C, insurance coverage, life situation, work situation, etc. If your liver fibrosis is very mild, you may be able to wait for the new drugs to come out in a few years. However, if your liver fibrosis is more advanced then time is not on your side and you would want to treat as soon as possible.
You may feel fine, but that does not mean the Hep C virus is doing no damage. Hepatitis C is called the silent epidemic (and the silent killer) because it does its damage in relative silence over a long period of time. Often times the symptoms that the Hep C is causing are vague and come on slowly and are often attributed to something other than Hep C. Usually, by the time a person has noticeable symptoms of liver damage, the Hep C and the accompanying liver damage have progressed considerably. A person can have cirrhosis and not know it until the crap hits the fan. There are plenty of people on this forum who had no clue they had Hep C and by the time they found out, they already had cirrhosis.
So, when to treat would be based on the amount of current liver damage and the other factors in a person's life. One thing for sure, it is better to treat before one progresses to advanced liver damage because not only is it more difficult to treat a person with cirrhosis (more complications from treatment), the cure rate is lower for those with cirrhosis. In addition, it is better to treat before a person develops diseases which may prohibit the person from treating. Also, I think it is easier for younger people to do treatment because their bodies are generally healthier than the bodies of older people. .
I am at Stage 2 liver fibrosis. I just finished 48 weeks of treatment (triple med treatment with Interferon, Ribavirin, and Incivek). I decided to treat because I want to get rid of this virus. I do not want to wait until I develop a disease which may prohibit me from treating. I had several extrahepatic manifestations of Hep C so my quality of life was suffering (but I did not know they were due to Hep C until after I was diagnosed last year). I am also 66, and the liver damage picks up speed as a person gets older. My biggest fear is developing End Stage Liver Disease so by treating I hope I can avoid that fate.
"Is the treatment as bad as you guys all say?"
Everyone is different and everyone reacts differently to treatment. Some people have few side effects and/or mild side effects, others have more side effects and/or more serious side effects. There is no way to predict which side effects you would have and how severe they would be. Most of the more difficult side effects can be treated with prescription medications. You just gave to find a doctor who not only recognizes the side effects, but also knows how to treat them. My biggest problem was not the side effect. My biggest problem was my doc and case manager had no clue how to treat the side effects and they also did not want to treat them. I did 48 weeks. I would say treatment is doable for most people.
"Will the treatment permanently change my lifestyle?"
If you mean will you have long term side effects, that can happen on occasion, but it is not the norm. Most people do not have long term side effects.
However, think of it this way, if you do not treat, your life style may very well be permanently changed, and not in a good way.
As noted, I treated for 48 weeks as have many others on the forum. Some have treated longer and multiple times. For most of these people, their life style has been changed for the better. As for me, I finished treatment a month ago. For the most part, I feel better than I did before treatment. Treatment was no picnic, but neither was fatigue, no energy, and aches and pains and other Hep C related problems (which I had before treatment). If necessary, I would do it again in a heartbeat.
"Is my joint pain because of my HEP C?"
It could be. Hep C can cause numerous extrahepatic disorders and symptoms. Muscle and joint pains are very common among people with Hep C. Hep C can trigger all sorts of autoimmune disorders, including arthritis.
"Will the treatment make it worse?"
I don't think so. I never heard of treatment making anyone's Hep C worse. The goal is to get rid of the Hep C and treatment can accomplish that goal.
"Will I be able to go to work/ take walks/ travel/ make love?"
I see no reason why not. In fact, you may be able to do all of those things better if you get rid of the Hep C . Like I said before, I feel better now than I did before treatment. I am doing every thing I did before treatment and more. And I am not getting tired doing it and I am not limited by aches and pains in the joints.
"If you guys were me would you just tell them to shove the treatment up their *%$, or is that as ignorant as it sounds?"
Since I just finished 48 weeks of treatment, and am glad I did, I would not advise anyone to shove the treatment. I lean towards universal routine testing and treatment. We know Hep C damages the liver but it also causes all sorts of other damage too. It is advisable, in my opinion, to try to avoid the damage Hep C can cause.
"Mostly, I feel too young to be complaining about joint pain and scared the reprecussions of my actions will forever haunt me."
It is possible the Hep C is causing all of your symptoms, including ones you have not yet noticed. You are young, but Hep C does not care. It just does its damage.
What is done is done. It won't do you any good to dwell on past actions. Instead, try to move forward, address issues, and do the best you can now. Try to ameliorate any damage done because of previous actions by taking positive action now.
"Does anybody have any good news?"
Yes! Many of us have successfully finished our treatments. Many people on the forum are being cured. People are being given new leases on Hep C free lives. Most of us plan to live another 30, 40, 50, 60 years and we plan to live it free of Hep C.
Here are links to articles about extrahepatic manifestations of Hep C. You will see that muscle and joint problems are common among people with Hep C:
Even though hearing that your liver enzymes and viral load are elevated is alarming, neither of those two things are indicators of the stage of your fibrosis. The way I see it is the best way to determine how far your fibrosis has progressed is to have a biopsy, ultrasound or Fibrosure. This is just my opinion because I personally could not stand not knowing.
There are less harsh, interferon-free treatments that are shorter in treatment duration (and side effects) in trials right now that are very promising. Some people refer to this treatment as the "all oral."
There is no reason you would ever have to stop being physically active. I am not sure there is an age limit on complaining about joint pain. In my case over training, failure to cross train and not stretching has caused more grief than anything I could ever attribute to Hepatitis C :)
I know this is overwhelming but the more you learn the better your decision making will be when it comes to if and/or when to treat.
Hang in there and let us know how this works out :)
I havent read the other answers above yet, but I also have the same shoulder thing you describe, and it first showed up while I was lifting weights at the gym.
Only, I caught my hep C (same history as you, but I have 14 yrs sober this month!) when I was 27 yrs, and the shoulder arthritis didn't show up until age 47 yrs. At the same time as my shoulder apin hit, my enzymes became WAY elevated. If the enzymes are about twice as elevated as the "normal range", then, rly no need to panic. But mine were ten times more elevated then they ad been over the last 20 years.
Because of this, I got my first liver biopsy. The experience wasn't at all bad, and I wished that I had not put it off for so long!!!
The joint pain you describe, Ihear tons of other Heppers describing! It
is referred to as a "extra-hepatic" symptom, meaning, a symptom caused by the Hep C virus, but not having to do with your liver. That being said, you having this symptom does not neccesarily mean that your liver is getting worse, which is the worst case scenario.
There are specific lab tests that can be done, to also check to see if
your liver is still healthy, if you have an aversion to a liver biopsy.
If I were you, I wpould have the liver biopsy done, and if you are Stage 0, or Stage 1, or even early Stage 2, I would wait for an Interferon Free Treatment, which is coming down the road, within 2~5 yrs, hopefully.
I did decide to Treat, because I was late Stage 2, and alot of my lab work was "out of range", and after treatment began, my hip and knee became arthritic, but luckily, now that my Treatment is over, I feel better, except for my shoulder. My Sternum/Clavicle Joint seems to be completely dislocated. I was double-jointed in my youth, which seems to have given me "lax" joints, which pop out easily now :(
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.