Hi hotdodson
Welcome to the forum.
This is a old post you have responded to. It looks like Chugen hasn't been around since 2010
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Also not sure if you are aware there are new treatements just released with more to come soon that maybe taken without interferon depending on your individual circumstances. The sides have been very mild to non existant for most people. Treatment are generally 12 weeks in length with very high rates of success in eradicating the Hep C virus.
I was a 3 time null responder genotype 1a with cirrhosis. I just finished 12 weeks of 2 pills a day and so far my virus is undetectable. I will know for sure at 12 weeks if the treatment worked completly and I am cured of Hep C. If you aren't seeing a hepatologist or gastroenterologist you may want to schedule an appointment.
One of the new medicines is called Sovaldi check it out
Good Luck
Lynn
I have had Hep C for over 20 years now, and although many people do not see a correlation between the HCV and other infections, bacterial & viral etc... I DO vehemently disagree! Hepatitis C has caused my body to become much weaker and therefore it has become much less effective in fighting different types of viruses, and infections. I have always been very healthy, hardly even catching colds, until the past 5 years, it began with a piercing in my ear which became so swollen it resembles what boxers call "cauliflower ear". The doctors could not figure out why my ear swelled up, did numerous tests, could not find any bacteria, or micro-bacteria, but it would swell up, and to this day it is deformed. Then I began getting spots on my legs, torso, etc... this turned out to be psoriasis... which is an autoimmune disorder. Now recently, I am having severe joint pain in my hands and feet, which they believe is arthritis. For somebody who has always been VERY healthy and active, (I am not overweight, I exercise, eat well, etc...) and the fact that I am only 44 years old, lead me to believe that the HCV does affect your bodies ability to fight off any type of virus, bacteria, and even hinders your immune system, making it more vulnerable to autoimmune disorders. My husband, who passed away in November from complications from Hep C, contracted MERSA while in the ICU, and he never was able to breathe without support for more than a short while again. He was a very healthy man, who worked out daily, ate well, etc. etc... but I truly believe that the fact that he was more vulnerable to any type of infection or virus because his liver was compromised. I do not think that Dr.'s really know much about Hep C, and they tend to brush concerns of people aside, thinking that if a person thinks things are related, they are "overreacting". Truth is, they really don't know. You know your body, just as I know mine. And I KNOW for a fact that all of these different maladies are related, just like my husband was more apt to suffer from the MERSA strain and are related to his/our infections with the Hepatitis C Virus. I hope this helps, I am not a doctor, but like I have said before, they really do not know as much as they would like to know about this virus. I wish more doctors were open to listening to their patients, I got very lucky and FINALLY found a Dr. who listens to me and agrees that I am probably correct. Take care of yourself, and be very vigilant about what you put into your body. Good luck to you, I know so many people with HCV who have had it for years with no ill effects, so every individual is just that! Individual... we all have different symptoms, and some people never really get sick. Others, the progression is very quick. I am somewhere in the middle, like I have said, Ive had it for over 20 years, and not until a few years ago after starting, and having a very bad experience with Interferon/Ribavirin, since then I have just not been the same. Some people do very well with that too - But maybe I waited to long to try it, or who knows? I had to file for disability last month because I am just too sick to work. Take care of yourself, above all stay away from alcohol !!!! A lot of your health is also very much affected by your frame of mind. I do find Meditation, and creative visualization very helpful. Whatever you can do to keep in a positive frame of mind, and positive will be of HUGE benefit to you as well, (maybe more so than anything else!) Good Luck to you!!!
Now I am in the pissed off stage!
I'm with ya, it really doesn't matter anyway. The decision to tell or not tell employers is really simple. Don't tell em.
You're genotype will be important to help determine how to proceed with TX. If you're geno 1, you might consider waiting for better TX ( treatment ). That's what I'm doing. Telaprevir and Boceprevir are Protease Inhibitors. They are used in conjuncture w/ Peginterferon and Ribavirin. They've increased the success cure rate substantially. Right now they are only available via trial. They will hopefully be approved by the FDA, and might be available as early as June 2011.
Cory
And be careful about telling your job - even if they aren't supposed to tell anyone they do.......I had one boss who wanted to fire me and then another boss who came in and saved my job cause he wasn't as stupid as the first and knew he couldn't get it by looking at me or sharing air with me or anything.
And no most people never find out they have it until something goes wrong and it's 20/30 years later. They don't do screening (not even during pregnancy) or liver panels as part of a regular CBC so there isn't any way to find out really.
I didn't mean your WBCs were getting low what I meant is that your immune system is busy fighting this disease perhaps and it could be weakend due to the stress on your liver and perhaps that is why you keep getting all these infections.
Unfortunately this is a disease you cannot just pretend you dont have, it wont care it will keep destroying liver cells and destroying liver cells until you have no healthy tissue left if you aren't careful. Well not in every case but in general I am speaking.
You need to get a biopsy and determine how vast the liver damage is. That is really the only way to tell what is going on in there.
Yeah, hence my comment. That's not a question we usually ask around here. Many people volunteer that info but as a rule we just don't outright ask ya know because it really doesn't matter.
Trinity
Way ahead of you Buddy. Don't ask, don't tell! Thanks anyway...forgive me...I am in the smart *** stage.
Low WBC can be caused by treating with interferon, to my knowledge it is not caused by having hcv. If you are not currently treating this would not generally be a issue.
- Dave
Welcome to the Forum!
So, how'd you get your hcv? Blood Transfusion. Without a biopsy you can't tell what stage/grade your disease is at. Ask about the Hep A/B Vaccine if you haven't already.
Cory
Yeah, My WBC is probably low and that is why I am very prone to infections. Geez, I may get as knowledgeable as ya'll. I really think I may suffer complications soon and I am grateful for your encouragement to proceed with steps to eradicate this disease. Unfortunately, this is reality and God knows I have tried to escape it long enough.
Chugen, if you read here long enough you will find there are those that attribute many or all of their medical problems to HCV when in fact HCV has nothing to do with it"
Unfortunately, this is quite true. And indeed I think most of us are guilty of it at first until we learn better. As it turns out though most things in the end wind up having nothing to do with our HCV and are just what they are - a bacteria, a headache, a cold.................totally unrelated. Which is why we often tell people "it sounds like...but go to your doctor right away".
The things you mention, as far as I am aware - are unrelated to your hep (although maybe your immune system is worn down from fighting off the virus and that is why you are prone to getting infections?).
Thanks everybody! I am accepting this diagnosis because suddenly I am sad.
Just wanted to add that MRSA, UTIs and pneumonia are caused by bacteria. The body's defense against bacterial invasion is the WBCs, more precisely the neutrophils. These are also reduced during treatment for HCV so if you decide to do the treatment make sure that your doctor knows about all of these infections first so he can keep a good close eye on things.
Diane
I had liver panels every year for 6 years and they all came back normal until this past January which is when I found out I have HCV. My biopsy showed I have stage 2 grade 2 damage. You can't assume anything with this disease. Please get a biopsy to find out how much damage you have and then you can make a good decision about when you should treat.
Another thing you need to keep in mind is that liver damage from HCV tends to accelerate after 50.
Diane
Not necessarily. I had annual military physicals for over twenty years and FAA flight physicals once a year after that and I never knew I had Hepatitis C until I started feeling the effects of cirrhosis. For most people in good health, a liver panel is not a normal part of a physical. Lots of people on this board did not find out they have HCV until they were quite ill as the liver typically doesn't "complain" much. You need to take the time to find out how extensive (if any) liver damage you have and the gold standard for that is a biopsy. Good Luck.
"Hey everybody! I joined your group yesterday and have been reading the comments for hours. All summer I have had MRSA, UTI's and pneumonia. Am I correct that this is related to HCV and will GI Doc be able to help when I see him next week? "
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Chugen, if you read here long enough you will find there are those that attribute many or all of their medical problems to HCV when in fact HCV has nothing to do with it and is not causing the problems. Be cautious and don't believe everything you read.
Trinity
Hi-
As you said it normally takes decades to develop complications and liver damage from hcv. Most doctors do not test for it unless there is a known risk. Most of us in our 40s-60s have already had the disease for decades.
Many of us (not all of us) have an idea of the generally time period when we got the disease. I assume I contracted it about 30 years ago from iv drug use (been clean for thirty years almost). Many people contracted it from transfusions and other medical procedures before they were able to detect hcv in the blood supply.
I had no symptoms or damage to my liver until the past few years. No indication that I was sick. That is why it's important that you see a hepatologist (liver specialist) or a GI doc that is very experienced with hcv. If you have medical insurance you should be fully diagnosed with your genotype, viral load (count), a liver biopsy, liver enzymes, blood counts...
I know you have a lot on your plate, but the disease is often silent and without symptoms until a person has advanced disease. I don't mean to scare you in any way. I just think it's important to really know what your condition is. Of course you have the right to let nature takes it's course if that is what you choose, but it's always good to make an informed decision and you can't do that without knowing your true condition.
Take Care,
- Dave
I do not know how long I have had HCV. Wouldn't it have shown up in various medical problems before?
I was going to say the same thing as Spectda. I was diagnosed in 2005 and a month later had a biopsy and found out I was already stage 3. BUT...I probably had the disease much much longer and never knew it. Most of us don't. We dont have any symptoms or problems that are attributed to HCV until usually when it's very late in the disease.
Get a biopsy - it sounds horribly painful but really for almost all of us we go "oh that was it?" afterwards. It's really just like a long needle and your liver had no pain sensory nerves to feel anything. Once you know how much liver damage you already have then you can see if you have time to wait. but you need to remember that you need to monitor your condition and have another biopsy every 3-5 years (depending I guess on how far along the damage is).
I was a single mom with two teens and I came to work every day for 72 weeks except 3 days (shoot I take more sick time now!). It was not easy treatment isn't fun but for the most part it is doable.
Heck if I could do it for that long anybody can do it!
Welcome to the group.
Deb
My GI Doc seems great, but are they usually anxious to start meds or remain cautious about treatment? Thank you all!
I understand that you were diagnosed 3 years ago, but do you know how long you have had hcv?
Welcome.
Dave
Hi again, Chugen—
Yeah, fibrosis generally takes years and decades to develop, but there are exceptions to that rule. There is a member here who’s son lost his life at 27; he never drank or used drugs that might have accelerated his disease progression. Of course, this is the exception rather than the rule.
Depending on genotype, and whether you plan to treat or not, a biopsy might be a good idea to see where you’re at with fibrosis. If it’s minimal, ‘letting nature take its course’ might be a viable option. The old saying that most of us will die with HCV rather than from it is often valid.
It sounds like you have your hands full right now; your personal situation should definitely be part of this decision, no doubt. Good luck with the upcoming appointment; the doc will likely order additional testing, then based on the results will counsel you as to your options. Feel free to ask questions and get to know the disease.
Take care—
Bill
Yes, there will be time to decide when or if to tx soon but first you need to find out more about your HepC status. I know you think you have only had HepC for 3yrs but there is truly no way to know how or when you were infected with HepC. You could have been infected a long long time ago. The important things to think about are getting the blood tests done and a liver biopsy. All of us have personal lives which have to be weighed against when is the best time to tx. I commend you for taking care of your Mother, that is great but along with that you need to take care of yourself as well. Right?