This was a good post, it helped me
Oh what a time last year was ...
I believe the following thread that was recently bumped was the one I was referring to earlier. You might have already seen this, but in case not, here you go......
http://www.medhelp.org/posts/Hepatitis-C/Post-treatment-symptoms/show/1542774
i agree with you, i always thought that something beside liver disease would kill my first, so i put off treatment. now i am experiencing cirrhosis. i believe that additional scarring caused by a course of antibiotics caused me to progress more rapidly. in two years my platelets dropped from over 200,000 to about 100,000.
another very well informed member of forum says that after an operation he got very ill and decompensated very quickly, perhaps because of the drugs he received during the operation. we encounter various toxins in life that a healthy liver can handle, but these toxins will destroy what is left of a compensated cirrhotic liver.
i am concerned that should i slip into decompensation, i will be a burden to society and the health care system.
thank for the Bennet Cecil information. i was thinking about him recently. i believe he had an idea that he could get to SVR by treating folks until that became undetected. he would stop interferon, and then he would wait until patients virus became detectable. at that point he would reintroduce interferon. he would repeat the cycle until the patients immune system was trained to fight off the infection. i wonder how that worked out.
blessings
eric
Thank you for the update info on cirrhosis.
Our local Hep C expert doc (who, from what I hear form the local VA pharmacist, makes people deaf, gives them crippling joint pain, etc in curing Hep C - he really likes to attack it) told me that a person with cirrhosis has a 5% chance per year of developing liver failure.
The local doc is Bennet Cecil. He actually has a very informative website. google him.
I had long ago come to terms with the idea of my death. We all die. C'est la vie. We might die of a car wreck or a heart attack or an aneurysm or lung cancer. Having Hep C doesn't mean we die of end-stage liver disease.
Part of my issues are that I was very hesitant to do the treatment but had family members ceaselessly pushing me to do it ...
Ah, I might have been cured with no side effects, either. I still think the side effects are way understated and lots of those who treat end up with side effects (altered psyche, slight cognitice impairment, joints that start to hurt three months post-treatment) that they (and their doctors and Roche and the FDA) never link to the treatment.
Anyway, GOOD LUCK to all. Thank you for your patience, kind words and comments. Gotta go live while I can! :-)
I know what you mean. It's a no brainer! LOL I will be praying for you to have an early response and SVR!
smiles,
christina
thank your for the informative link.
if i thought that i could remain in compensated cirrhosis for the next 5 to 7 years without decompensation, i might try to wait for the interferon sparing treatment. i slipped into cirrhosis after about 25 years with the infection. i believe antibiotics caused a rapid progression into cirrhosis.
i am very aware of the dangers of these drugs and i expect to feel much worse after i treat than prior to treatment, but the prospect of a slow miserable death as a result of end stage liver disease is not something i care to experience.
blessings
eric
I found an article this morning about interferon treatment and it's affects on the brain. I posted the link so that everyone could read it. Personally, I feel that the risks are much greater than we have been told. Please check it out and let me know what you think.
here is the introduction for the results section of the article i posted above.
Progression to Cirrhosis in Hepatitis C Patients: An Age-dependent Process
Pierre Pradat; Nicolas Voirin; Hans Ludger Tillmann; Michèle Chevallier; Christian Trépo
Authors and Disclosures
Posted: 04/23/2007; Liver International. 2007;27(3):335-339. © 2007 Blackwell Publishing
Abstract and Introduction
Abstract
Background: Age at infection is known to be associated with disease progression rate in hepatitis C virus (HCV) infected patients. The aim of this study was to assess when cirrhosis is expected to occur according to host and viral factors.
Methods: Fibrosis progression was studied in 247 naive HCV patients using multiple regression analysis. The expected age at cirrhosis was calculated for each patient.
Results: Progression rate was 0.13, 0.14, 0.27, and 0.36 U of fibrosis/year for patients with age at infection ≤19, 20–24, 25–36 and ≥37 years, respectively. Age at infection above 37 years was independently associated with fast progression (rate>0.13; P=0.001). Body mass index >25 kg/m2 and alanine aminotransferase>3 × ULN are also possibly associated with faster progression. Based on progression rates, the expected age at cirrhosis is 65.4, 64.6, 64.8 and 69.4 years for age at infection ≤19, 20–24, 25–36, ≥37 years, respectively.
Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis. A specific active monitoring and therapeutic approach should be adopted in older patients to prevent progression to cirrhosis and its complications.
i am sorry you had a hard time with post treatment side effects. please take a look at the following information. the median age for progression to cirrhosis is 60-65. your information is out of date.
http://www.medscape.com/viewarticle/554637_3
Patients' characteristics are given in Table 1 . The median age at infection was 25 years (25% quartile= 19 years; 75% quartile=37 years), and the median disease duration was 14.5 years (25% quartile=10.2 years; 75% quartile=19.4 years).
The median rate of progression for all 247 patients was 0.13 U of fibrosis/year which gives an estimated time to cirrhosis of 30.8 years. This rate of fibrosis progression varied according to age at infection (Fig. 1) and was 0.13 for patients infected before 20 years of age, 0.14 for 20–24 years, 0.27 for 25–36 years and 0.36 for patients with an age at infection above 36 years (Kruskal–Wallis test gives P25 kg/m2 had a significantly higher progression rate than patients below this threshold. ALT level was also associated with fibrosis progression with a faster rate when ALT>3 × ULN. However, there was no association between the rate of progression and gender or genotype ( Table 2 ).
(Enlarge Image)
Figure 1.
(a) Rate of fibrosis progression according to age at infection given in quartiles. (b) Time to cirrhosis according to age at infection given in quartiles.
Based on the median rate of progression, patients were then classified as fast progressors (progression rate above 0.13 U of fibrosis/year) and slow progressors (progression rate below 0.13) and univariate and multivariate analysis were conducted to detect factors possibly associated with a fast progression. Table 3 indicates that only age at infection above 36 years seems to be associated with fast fibrosis progression. However, as BMI information was only available for a limited number of cases (n=25), this variable was excluded from the multivariate model.
Based on each individual rate of progression, the estimated age at cirrhosis in the absence of treatment was then calculated for all patients according to disease duration. The estimated age at cirrhosis was 65.4, 64.6, 64.8 and 69.4 years for patients with an age at infection ≤19, 20–24, 25–36 and ≥37 years, respectively (P=0.004). Thus, except for the latter group, all patients were calculated to develop liver cirrhosis at the age of approximately 65 years.
To see whether age at cirrhosis varied according to particular patients' profiles, the estimated age at cirrhosis was presented according to three parameters: age at infection, gender and genotype (Fig. 2). Although the number of patients in each category is rather small, this figure indicates that only women with an age at infection below 37 years and infected by a genotype non-1 have a much higher estimated age at cirrhosis (89 years). In all other groups, age at cirrhosis is quite homogeneous and around 60–65 years (P=0.11).
(Enlarge Image)
Fgure 2.
Estimated age at cirrhosis (in years) according to age at infection, gender and genotype (n=137).
I believe you have misinterpreted what I wrote. I also think you have misinterpreted some of the other information available to you. I am sorry that you are one of the unfortunate few who have developed awful symptoms as a result of treatment and very sorry if I have offended you in some way. However, if this were such a benign virus than why would everyone be so concerned about getting rid of it? Actually, there are other diseases that can be stimulated through Hep C infection and not just liver failure but I think the rate of never developing cirrhosis is more like 70% rather than 80 to 90%. I recall a poster indicating that she was stage 0 for more than 20 years and then within a few more went into stage 2 to 3 with some bridging. The court is still out on the actual incidence of decompensation because people are still alive. Hopefully, you will find a way to live a good life despite all. You probably made a good decision with what you knew at the time but were terribly unlucky.
In response to your post about "natural progression" ... I was there. You are 100% wrong. Ou rlocal Hep C specialist also attributes it all to interferon / ribavirin.
What I have is not "natural progression." Upon cessation of interferon, I had an explosion of bizarre symptoms in my body that have not until recently "plateaued" (all of my nails have gone icky - it's horrifying). My nether regions have psoriasis. Some days I fear I will lose the ability to ambulate - other days are good. I have mental lability - way up, way down - recognized neurological side-effect. It's easing as time passes.
my ankles, feet, knees, hips, wrists, fingers, palms, right elbow. all have developed arthritis in the last two years, all starting about two months cessation of treatment and steadily getting worse. If i can't stop it, it will kill me because i won't live as a cripple in pain.
I am getting through all this. I have no choice. I pray and meditate every day. I try not to be angry. Anger just ruins and hurts me.
But I am telling you that I was counseled by the doctors that I would have "fatigue and flu like symptoms." I read the literature and warnings that accomapnied the drugs. "Psoriasis" went right over my head - i had no idea that would mean that I might wind up socially isolated due to plaques where the sun doesn't shine. Psoriatic arthritis was not mentioned.
Neurological brain damage was not mentioned.
I informed my doctor of the "serious side effect" of skin rashes as the literature told me to do - he just shrugged. At the end of treatment when I asked him about the skin rashes, he said, "Oh, they'll go away"
One month post-treatment to 3 months post treatment, I could not eat any even moderately spicy food - it burnt my mouth so bad. That is not natural progression. That is bizarre, "you have whacked out my body" stuff.
The worst side effects may come after treatment is stopped.
The following is from 2002, so it may be dated and one may want to look at more recent statistics.
"Seventy-five to 85 percent of those exposed to the virus develop chronic infection. But if you are chronically infected, there is an 80 to 90 percent chance that you will never develop cirrhosis, and a 95 to 99 percent chance that you will not die from chronic liver disease."
http://www.hepcprimer.com/patient/book_excerpt.html
I have lost my physical powers from interferon / ribavirin. I had no idea it was possible. I wake up most mornings feeling like I have been in a bar fight, i hurt so bad. It is hard, because if one is in a fight or an accident, one recovers. Inteferon / ribavirin kicks my butt every day and will do so for the rest of my life.
Big Pharma HAS hijacked sanity in medical care. While chiropractors and other alternative med providers have been saying it for almost 20 years, I am now finding more and more physicians saying (and feeling) the same way.
It may also be that we have let them do it.
Want to fight diabetes, obesity, high blood pressure, cholesterol and depression? Buy a bicycle and use it daily.
Here's an interesting take on BigPharma and antidepressants from, of all places, Aljazeera - English:
http://english.aljazeera.net/indepth/opinion/2011/07/20117313948379987.html
Here's a beautiful clip on bike riding, health and society in large:
http://www.grist.org/biking/2011-07-07-detroit-reborn-as-bike-city-video
I'm a bit puzzled that Kellogg's has linked to my post above on "good habits"!
I appreciate your input. Somebody said something about my vision... I think you are thinking about somebody else. I only have presbyopia... you know... when you can't see up close after 40.
I already did my 48 weeks, so there isn't any undoing that. I was UND after the first 6 weeks post tx, and my doc isn't going to check me again till September which will be 6 months post tx.
My job is a real estate title abstracter... I have to be able to keep names and details in my head till I finish a title search... details like the dimensions of a piece of property... mortgages, taxes, judgements against property owners both present and previous. My poor husband has had to do the hard searches for me so far because I can't keep the details in my head. I guess in a way I'm glad that the real estate market has slowed down. I had to quit working last June because I made a $1,900.00 mistake that we have to pay and we can't afford that... not after paying my 5,000.00 deductible on my insurance so it would pay for my tx.
For people reading this and thinking they don't want to do tx because of it... base your decision on the condition of your liver. If it is worse than stage 2 you just have to sacrifice a year or so in order to save your liver. As nygirl often says, and I agree with her completely... all of these problems are nothing compared to end stage liver disease.
Susan, note that I said "Big Pharma and doctors are not responsible for ALL your woes". There are side effects for nearly all meds. Seroquel is an anti-psychotic but it is important to note that people with Major Depression do have psychotic symptoms. I didn't read the whole thread so I don't know what you were responding to. I do not like psy medication and I think that most of the time psychotherapy of a substantial frequency suits just fine. Howevr, when speaking about something like Hepatitis I don't think it is a good idea to take an extreme view against doctors or medication.
I was on another thread for a time re a new approved med for another condtion (not Hep). There were some on the list who, likewise, had a tendency to attribute all their symptoms to the med. and the incompetent doc who was treating them. I do believe we need to advocate for each other and our families and would never go under anaesthesia without someone standing by to ensure I wasnt the victim of a med error. However, I also feel we need to pick our docs and our treatments before hand and then have some faith that they know what they are doing. It also helps to realize tht we are dealing with a powerful enemy and can feel helpless at times. Helplessness can push us into looking for a target that seems within our control when really, it is in the hands of the gods.
You have diabetes ? I don't understand the point you tried to make. I'm not 64 with a poor memory. Putting my phone down, for 1 second and totally forgetting it is new to me.
As you said you have not treated, so why are you telling people who what's up ?
Get real.
Given your statement that big pharma and docs are not responsible for medical woes, I invite you to check the link I posted on the social side under Rant On. Please read this and then let me know how you feel about what you read.
I forgot to mention that the disorders kicked in between the ages of 48 and 52.
I have not had any treatment. Likely as a result of Hep c infection shortly after menopause, all the conditions you describe set in. My thyroid had to be irradiated and I have incurable skin an oral problems along with diabetes. I am chronically fatigued, sluggish and becoming less mentally alert. All are well known as precipitates of HCV infection (along with a probable vulnerability). Sometimes things are not as they seem. People can acquire conditions related to Hep C which are not liver failure or liver cancer. If the treatment failed it is quite possible that you also are having hep c related, not treatment related, conditions. Also, if the treatment failed, your tests are not normal. The viral load, the most important, shows that you are infected. All of my other tests have been normal or nearly so, for 40 years. You can still get all these other conditions with normal blood tests. Big Pharma and doctors are not responsible for all your woes. It is your body mostly, that is rebelling against you.
Here's a link that you might find interesting. Although they are selling brain programs you can take various tests on this sight without buying anything. You'll get your test results and this will give you an understanding of which brain abilities might stil be l fine and which are not.
http://www.positscience.com/games-teasers/mind-games/brain-speed-test
Apolgies to all for the a priori regrettably un-edited, somewhat disjointed and a titch-too-much-drama rant ....
Diane, please just consider that your good-intentioned and honest doctor relies on drug company-produced and FDA-approved literature for guidance. These sources do not (and cannot reasonably be expected to) provide the whole balanced truth.
Which is why the smart money (that's you) is here finding out more!
Be careful and God bless! :-)
I respectfully and from the deepest part of my heart say that I would not recommend interferon therapy. Perhaps Hep C will cut your life short. Almost certainly, however, interferon combination therapy will diminish the quality of your remaining time and may very well leave you with serious, lasting problems.
My thyroid has gone bad. I developed psoriasis and psoriatic arthritis during therapy - these are both very isolating, life shattering diseases. "Creaky joints" is a very, very common side effect. I have suicidal thoughts that I fight a lot and I suffered cognitive impairment. I was really smart before and feel pretty smart now, but not as sharp as i was.
Also, the treatment failed for me. It does fail. I have since failure and since developing arthritis and psoriasis started really taking care of myself with respect to food and exercise. (I should have done it before, I know). Anyway, I am amazed at how my liver enzyme levels have dropped to almost normal just with really good habits.
The metaphoric "apple a day" is far, far better than interferon therapy in my opinion. The interferon alters your body too much - it is scary - they admit in literature that they don't even know how it works.
The CDC reports that 95% of people with Hep C die with it not of it.
I respectfully submit that while interferon helps some, it hurts others, and on balance it is a bad deal for society and for patients to engage in interferon therapy given the costs and the risks.
I fairly strongly believe that reason and balance have been hijacked by BigPharma for corporate profit interests, to the harm of patients and our national economy.
Note also the following article, particularly the statements by the UCLA Director of Clinical Medicine:
http://www.nytimes.com/2010/07/22/business/22hepatitis.html?_r=1&adxnnl=1&ref=health&adxnnlx=1310899764-6GubmTVURIhX4TtEhO067g