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Avatar universal

SHOULD I BEGIN TREATMENT FOR HEP c-HELP PLEASE

I went on this website because I am scheduled to begin treatment on 1-8-2009. I am a trial lawyer and have blocked out every Friday for the next 6 months so I can take the shot of Pegays Thursday night and then the pills 2 times a day.

I have read some of the threads on this site and am now both terrified and confused. Any help would be greatly appreciated.

I was diagnosed in 1994 during insurance physical. I have always been in good shape, 6 ft 180 and job or walk very fast 5-6 times a week 5 miles a day and have done so for years. My ALT/AST was always normal from 1994 until 2-2006. I took liver biopsy on 2-5-2006 and for the first time the blood test I took one day later showed my enzymes were above normal. I continue to believe that it cannot be a coincidence but my doctor says otherwise. My liver biopsy came back a 1 for fibrosis and inflamation and it was read by 3 experts and they all say it showed very little inflamation and minimal fibrosis.
My "titers" have been consistently under 300k and currently are at 110k
I get my blood drawn every 3-4 months and for last 2 years has been about 1.5 normal for both ALT and AST until my last blood test which  showed 61 ALT and 37 AST, which I am told is now back to the high end of normal.
My doctor tells me that there is an extremely high chance that I will clear after 30 days (I am geno type 1b) and that if I do there is a 90% chance I will be cured and can stop treating after six months.
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I have never taken any anti-depressant drugs and have declined the offer to begin prior to treatment beginning.
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After reading these entries I am now thinking that since I am in good shape (I am 56 years old) that maybe I should wait until Vertex 950 or another medication is approved (I have been told by 2011 Vertex should be approved). My doctor has had me take liver spleen scans every 18months and they have always been normal.

So what do I do? What advise could anyone give me because I am terrified. I have a general belief that the only meds you should take are Milk Thistle, Omega-3 and Vitamin C which I have been taking every day for 14 years now!!!! So what guidance can you guys give me.

When I feel totally healthy and have no symptoms should I commence treatment and put these drugs in my system not knowing how they will effect me during treatment and beyond? However, on the other hand if I wait to treat, what are the chances that my liver will rapidly decompensate. My doctor says TREAT NOW because my titers have been low for over 2 years and are not at only 110k??? I had a blood transfusion when I was one year old and since then have not been engaged in any type of activity that could have led to my diagnosis. If it is true that I have had this since age 1 and if in 55 years it has only progressed to this point, should I "risk" that I will only get worse over a short period of time or should I "risk" the short and long term side effects of treatment with Pegays and Ribovirin?

HELP PLEASE with your thoughts and please be BRUTALLY HONEST because a lot is at stake for all of us and I am certain you folks who are involved with this website have much more knowledge than I do.

Sincerely
WK LAW
46 Responses
Avatar universal
Hi:

Welcome to the forum. You are asking the right questions, and are wise to question whether you should treat given the circumstances. I think one important question is what is the current condition of your liver? Your biopsy was done nearly three years ago, and liver enzymes aren't a reliable measure of liver health. I don't believe that liver spleen scans are terribly accurate either.

Although you have a low viral load, against you are your genotype and your age. The chance for cure you cited might be a little optimistic.

I treated for 72 weeks and was able to continue working full time as a surgeon; however, it wasn’t fun. You might not be nearly as lucky, and I think luck is one of the primary determinants of how bad your side effects might be.

Knowing what I know now, I would not go through treatment right now if my liver biopsy showed minimal changes. In fact, if my liver stayed healthy I might forgo all treatment. I’ll be interested in what others here have to say. In the end, though, this is a decision for you to make with your physician’s help.

Keep up posted on your decision.

Jeff
Facta non Verba
Avatar universal
At some point in your life you will probably have to treat.  Liver disease will progress, that is what hepc does. Each stage of damage means the liver has been been ravaged by the disease.  Ultimately, the decision is up to you.  Side effects are not only associated will treatment.  Just having hepc comes with entire array of side effects too.
Basically, it's what you can live with and how your body feels.  I would never advise anyone not to treat even with the side effects I've experienced and the length of time I have to treat.  If I had treated years ago, I would not be a stage 3 now.   Good Luck with your decision.
Trinity
Avatar universal
I agree with the other posters that your doc sounds a little optimistic. Cure rate are not that high for genotype 1b and generally the treatment takes 48 or 72 weeks. You and I are similar age, weight, and level of physical activity. I'm now in my 51st week of treatment (going to 72).

There are many reasons it's hard to give advice. The course of the illness is unpredictable. Even though it's been progressing slowly, it might progress more quickly at any point. Also, people's response to the treatment is different. Some people tolerate with few side effects others have a harder time.

If it were me, based on my own experience, I would wait three years and see what the treatment regimen is like. I also have a job that demands a great deal of mental agility. The interferon can effect your mental functioning, creating something we call "brain fog." I know you would find that, on top of the fatigue, extremely demoralizing. It's like you've lost your personality. If, otoh, you've got enough saved up to work half time for a year, then I might go ahead.

Like I said, it's a tough call. One thing for sure is that if you don't treat right away you should monitor your progress as you are doing. Good luck.
Avatar universal
I understand how you feel. I also have very low levels of the virus and no liver problems.
Initially, I decided to go full speed ahead, but have rethought the whole process and decided to slow things down and get a second opinion at a teaching hospital. Good luck.
9648 tn?1290091207
Actually, I have heard that if you clear within 4 weeks, even with geno 1b, that you may consider a 24 week tx. That presumes a low starting VL, which you have.

I also have geno 1b, usually low VL, and a relatively inactive virus (verified by no change in biopsy between 2002 and 2008 and a low stage/grade after at least 30 years).

I have been symptomless. Every time I have something that I've thought *might* be the hep C it's turned out to be something else. Joint/bone pain? Vit D deficiency. Tiredness/fatigue? Yeast syndrome.

I've been tossing around the "to tx or not to tx" question for six years. I don't think I would have started had I not gotten in on a clinical trial for boceprevir which raises the 50/50 odds to about 75-80% chance of clearance--if I get the trial meds. If I don't, and I don't clear, I will get rolled onto the trial meds, so it seems like a good gamble for me to take considering that my last kid just left home, I got laid off from my job and don't have to be able to think , and I'm not getting any younger (54), and I have a strong and wonderful support system.

So, I opted to treat. I don't think I would treat without knowing I have access to the new meds, though. Also my trial provides rescue meds if needed, so that was an important factor.

The problem you might face in getting into a clinical trial, is that (at least where I am) I couldn't pick my shot day and ended up with Tuesday. That's not so bad for me, but if I were a trial attorney it would be a real problem.

Looking at the problems that some people are having after tx is very sobering. It reminds us that these meds are very strong and even dangerous. Txing should never be entered into blindly, and I think that one needs to have a plan. For instance, in your case, if you start and *don't* clear by week 4, maybe you might want to stop and wait for the new meds to become available?
Avatar universal
One clarification to GreatBird's post – some people experience symptoms immediately upon injection but many do not. And I'm told that those immediate flu-like symptoms on injection pass. So the injection day is not as critical as some make it out to be.

For myself, I experience the worst symptoms three days after injection, when I assume the Pegasys is at its fullest. My injection day is Monday, so that means Thursdays are a bit rough.
Avatar universal
"I went on this website because I am scheduled to begin treatment on 1-8-2009. I am a trial lawyer and have blocked out every Friday for the next 6 months so I can take the shot of Pegays Thursday night and then the pills 2 times a day."

I too am a trial lawyer and, like you, I scheduled my injections at weekends so I could have the weekend to recover.  I was able to continue working for almost 9 weeks after beginning treatment, though in retrospect I should have stopped earlier.  I took medical leave after a day when I appeared in court and found myself in front of a judge and unable to recall any of the facts of the case.  I had severe hemolytic anemia and very bad "brain fog" throughout my treatment and it became sadly apparent that I could not practice law while on treatment without committing malpractice.  I simply could not get my brain to function properly while deprived of oxygen by the anemia.  I took a medical leave in order to regain my health without losing my license.  The good news is that I was able to clear the virus by week 4 and have remained clear.  I am now 5 months post treatment and have been back at work for over 2 months.

I wish you well in your treatment.  You may have little or no trouble with side effects.  I would count on doing treatment for 48 weeks with geno 1b, unless you have a very low baseline viral load and you clear within 4 weeks.  In that case you MIGHT get away with only 24 weeks.  Best of luck.

jd
Avatar universal
First, welcome to the forum.

If your viral load is consistently under 300,000 IU/ml then your doc may not be that far off the mark. One strategy then might be to test at week 4, then if UND treat for another 20 weeks and be done. Can you be that disciplined? It's a slippery slope and a more probable scenario is that if not UND at week 4 -- having invested time and energy -- you will plod on to week 12 and then treat 48 weeks if UND. Worse, if not UND at week 12, then you will plod on to week 24 and treat for 72 weeks. A slippery slope it can be. My suggestion is to try for the short course (24 weeks) but if detectible at week 4, stop treatment and then fight another day with better drugs. Alternatively, you could just wait for the better drugs but I might be a little tempted to treat now because of your very low viral load. On the other hand you have so little liver damage. Not an easy choice but just don't get sucked into 48 or 72 weeks of treatment as a stage 1. My opinion only.

-- Jim
Avatar universal
I am blown away with the many people who truly care enough to step up and offer such poweful and amazingly valuable information.

These postings show me that I am not nuts and it is a very tough call. It is clear that there is no easy answer.

I have to face reality that I am just not a very brave person and also am the type of person that would likely "imagine" symptoms were happening because I have read that 54% of people have dizziness. At 56 I am dealing with enough "non treatment brain fog" already. I can only imagine what will happen with my law practice during treatment.

I have read many postings of people who talk about having lingering side effects for years after treatment. That is one of my greatest fears, that I go through the treatment, and whether I clear or do not clear, I end up with life long serious medical issues that I have never had to deal with thus far in my life.

I clearly could treat for 4 weeks and if I clear stick it out for 24 weeks, but my concern is mostly "what then" and what price am I paying now to try to rid myself of a disease that has not impacted me so far in my life.

I have a very close friend whose mother is 85 and she has had hepatitis C for at last 30 years, and maybe longer. She drinks 2 glasses a wine, 3 times a week and is still going strong, with enzymes that are the same level as mine.

If I really was exposed when I was one and in 55 years I am only at stage 1, an optimist would say, maybe it wont progress, or maybe a much better and less toxic drug will come along in next few years....maybe I am dreaming.
Still so much to think about..
I just want to say that many people told me, "Whatever you do, dont go on these postings because you will only read horror stories, because all of the success stories dont waste their time on these sites". I think they are nuts. The people that I am reading about our REAL PEOPLE who have REALLY FACED this decision and have so much valuable imput it is helping me greatly. Thanks again. Any other input would be appreciated
Avatar universal
I have Hep C for at least 30 years, stage 1, grade 2, vl 2.7 million.  I have no symptons other than fatigue, and I contribute that to getting older and thyroid issues.  I found out a year and a half ago, and it was devastating news.  Countless hours were spent reading this forum and I learned so much, but reading about the treatment scared me to death.  I decided not to treat, but keep a eye on it.

I tried my best to forget about it and get on with my life.  I found myself not having that glass of wine with dinner, no diet pops, trying to eliminate sugar and anything that was not liver friendly.  No matter how hard I tried this virus could not be erased from my mind.  I'd wake up in the middle of the night and search this site and many others for  information.  No matter what I did it was always in the back of my mind.  

About 6 weeks ago I received a call from Vertex Trial, and have decided to treat.  My first shot will be Jan. 12th.  I am scared to death and also worry about permanent side effects, which is my main concern.  However, I also worry about dying from Hep C, I worry about liver cancer, or this developing into chirrosis.  

I really want to get on with my life and the only way I can do this is to get rid of this virus, or at least know I tried.  Imagine how I would feel if 10 years from now this developed into chirrosis, and I sat back and let it happen because I was too afraid to do treatment?  The regrets and guilt would be to much for me to cope with.

I am young enough ( 53 ) and strong enough to treat now, I may not be in 5 or 10 years.  No telling what other health issues may arise.  It was not a easy decision to make, but for me its the right one.  

Good luck to you whatever you decide and glad you found this forum.  The people here are great and provide wonderful support.  

Avatar universal
Wow, it is amazing how close in time our projected start dates are.
I think you are lucky to get into this trial because you have a better shot at clearing with the Vertex 950 from all I have read. I think my decision would be easier if I was in your trial.

You are correct about one thing. We can always look back and wonder whether our decision was the right one. You are brave to be about to go forth. Please keep me informed as to how you do after each week and I will do the same if I begin to treat. It will be very helpful to both of us.
My prayers are with you.
Avatar universal
Looks like you have kept an eye the virus for some time but the time is at hand for the decision is to, just do it. If not it will be like a nagging nerve of should of, could of, but waited and for what. The viral load has remained constant but at some point the immune system will start to waver because of other illnesses needing attention, not that the viral load is a precise indicator of liver damage but as it rises from low numbers to higher numbers it is an indication the immune system is starting to be over run by the virus like a scratch being unattended and at our age the virus has the upper hand going forward.

I am a 1b or was hopefully and did 52 weeks and was not prepared at all going into treatment and did not really think about it other than the fact the nerve started twitching more often than not and the fatigue started taking its toll, ignorance blitz in some cases but the reality eventually sinks in in that its not going to get any better. It was time to just do it and get er done. Looking back the first 12 weeks of treatment were the hardest because of the many biochemistry changes going on with in and was the most unsettling time physiologically. The first shot brought on a constant headache and mild flu like symptom then the riba kicked in about three days later and by the second shot I was in quicksand. Jim’s alternating opinion of many is pretty much on the mark for which I hold him in a high regard, of the presentence of the 4 week pcr to be used as a basis foundation in what time frame you may be looking at and go from there. I will bring up one point about the peg dosing time, I have personally found that when taking the peg shot on Friday I was hit the hardest by Monday / Tuesday and I see that you plan to take the shot on Thursday, you may want to read up on the inserts of the meds and the cmax times of each. Good Luck in your decision going forward. BTW! Welcome to Hepperville.

jasper
479244 tn?1271563659
I too picked friday as my shot day and quickly found out that Tuesay and Wed. were my worst days.

I talked my np into letting me back it up to thursday but she would not let me move it any further back.

Maybe someone should start a poll for prior tx'ers and find out the worst day..... might be interesting... good idea!  I will!

good luck!
bandman
Avatar universal
By coincidence, Willy posted on another thread (currently sitting below yours on the board) and I thought you might want to read his view at:

http://www.medhelp.org/posts/show/721962?post_id=post_3818539

I really appreciate Willy's viewpoint and wish I'd encountered it earlier. I'm about your age, with a similar profile and was somewhat pressured into treatment by my very zealous son, who is a cancer researcher and GraniteKonig's age. They both share an enthusiasm for the unequivocal benefits of medicine. I am more of a skeptic, as is my hepatologist who likewise thought I was in a position to wait for better and quicker protocols, without endangering my situation. The difference between you and me is that I was in a transitional stage and had no pressing responsibilities, so that made it an opportunity that I wasn't sure I'd have again. You, however, are plunk in the middle of career responsibilities and in this economic climate, it may not be the best time to put a foggy opinion to paper and in any way compromise your reputation.

It may seem hard to pull the plug on your upcoming treatment now that you have a start-up date next week, but in fact it's the easiest time. I could have pulled the plug right up to the moment I took my first injection in May and my doctor would have been more than agreeable that I wait for better protocols. Now I'm in week 32 of 48 and won't quit but do wish I'd had access to Willy's point of view when I made my decision to proceed. And as I said, it was a convenient and unpressured time for me but in my case, I would have done well to wait two or three years.

Of course, insurance coverage plays a factor for most people.

Here's a cut and paste of Willy's post:

Willy50
Male
Member since Oct 2006
Mood: Willy50 loving spring after a brutal winter in the gulag.
2 hours ago
To: the goal is good health.

What is the best way to attain or maintain that?  I am 55 and in good health with low damage staging.  Yes, I could treat, but I may be able to limit my collateral liver damage through some diet and lifestyle modifications while I WAIT.  This isn't proclaiming a cure; it's only about attempting to mitigate damages while monitoring ones progression.  My take on it is that IF I can wait things out for a few years I will have a far better chance of treating once successfully and for a far shorter period.  Since chemotherapy is not without it's own danger and potential damages one must weigh out the risks and rewards.

For me it is far more complicated than the presented premise.  

Think about 9-12 trains leaving Topeka at various speeds.  ; )  (and differing departure dates)

One might be represented by going to the local doctor and doing TX today.
Another might be going further out of town and getting a great hepatologist as Jim suggested and doing TX TODAY, possibly with some *tweaking* of treatment convention.
Still yet another might be doing TX but adding Alinia to the mix
or getting onto a trial such as Boceprevir or Telaprevir.

All of these methods might yield different outcomes, mid course response rates, side effects, treatment lengths and ultimate outcomes.  One also cannot also simply determine "success" by whether one attains an SVR or not.  Many people suffer some short term, long term and in some cases permanent sides from TX.

Some of the "other trains leaving Topeka" but further in the future........
The ability to take an approved drug such as Telaprevir or Boceprevir and have the ability to treat with more flexibility than current trials allow; that may mean dose increases, pre-dosing with SOC, a "surge" at the beginning of TX, combining with Alinia or other drugs that may reduce IR that are just being evaluated now.
...... or a future trial in which protease inhibitors might be combined with polymerase inhibitors.
.........or any of the vast number of drugs in trials right now.
....... or use of the Chron-vac inoculation which is showing great promise in greatly reducing viral load.  We may soon be able to rid ourselves of the virus without doing chemotherapy, or lowering our viral load such that a much shorter course is possible.

So many trains that one can catch....... and the passengers are all different, too.  Some MUST travel today, some can wait to catch their train.  Some who wait may wish that they had left earlier.  Some who leave today may end up wishing that they waited.  We all progress at differing rates based on genetics, lifestyle factors, age, sex, etc.  We will all experience differing extra-hepatic issues if we don't treat just as surely as we will end up with differing side effects from SOC if we DO treat.

For me the calculus of the equation; when to treat, what to treat with per each individual case is more complicated than many people consider.

I am still in the process of waiting.  
I just passed on an opportunity to get into a trial using Telaprevir on treatment naives.  I had a 100% chance of getting triple therapy.  I still ask myself; why would I pass that up for free?  It seems like a no-brainer.

Here's why I waited.  We may have only one pass on the protease inhibitor train.  It is theorized that resistance will occur if the treatment is unsuccessful.  I chose to wait (since I have some leeway in time) knowing that I will be able to treat with greater odds of clearing in the future as well as a shorter treatment time.  
It was a hard choice; it may not have even been the RIGHT choice, but just when does one know for certain what to do in the treatment equation?

Best wishes and happy new year......

Willy
:



"
Avatar universal
There are so many other factors to consider not just age, geno and VL (first off although experts say a low starting VL is a good indicator it is NOT always so - I had a low VL and sometimes it makes it HARDER for us to clear...I don't know why but it is the case, maybe because our immune systems have been fighting the virus so hard that the meds can't respond as quickly to get our immune systems to do MORE than they already are? I don't know) but I had to treat for 72 weeks because I was not clear until somewhere after week 12 and before week 24 even though my 4 week test was all the way down to 400......it got stuck there and wouldn't go any lower.  I was first told of this phenomenon when I started by someone else it happened to....and it is just a sad fact of life.

That said you have pro's and con's. Pro's are you are starting with little inflammation and have a good chance of recovering your liver back to stage 0 - that's a great magical thing. Me it was already too late for me when I found out I had this I was already stage 3.

Your liver isn't going to get better than it is and the disease will progress. Nobody knows for sure if the telepravir and trial drugs will ever be approved by the FDA or not. We've seen promising drugs come and go before (but these are looking good!).

I worked all 72 weeks but it wasn't easy. Some days I fell asleep at my desk.

You have to consider things like "will I have insurance later on if I decide to wait or could something happen to change that" (my tx cost was about $200,000 altogether with all the different meds and tests) do you have a good support group to help you out now? What should happen if treatment fails......with 50/50 odds you might need to treat again later, will your liver have enough healthy tissue later on if you need to do it again?

It's a big giant gamble and nobody has any hard facts whether you will succeed or not unfortunately. Its all guesswork and that is why you have to take every bit of it into account - not just the starting VL and grade/stage.

Good luck with your decision.
Avatar universal
Should I treat?  In my case the decision came down to the following:  Do want to to carry around a virus that will inevitably destroy my health as well as being a potential danger to those closest to me?  Or do I want to treat knowing that the treatment will be harsh and theat the overall odds are 45% give or take for a cure?  

For me the answer was a no-brainer.  6 months after I was first diagnosed I began treatment.  Geno 1 at age 52 overweight but in otherwise good health.  I went undetectable 1 months into treatment and remain so in my 7 month of treatment.  All my liver and glucose tests went back to normal within 1 month of treatment.  My blood pressure dropped and went back into normal range.  I gave up smoking , caffeinated beverages and social drinking .

I lost my job (computer programmer) because of physical and mental side effects and went on temp state disability.  Big deal.  I can always get another job after treatment.  Small price to pay for a healthy rest of my life and no fears about being a danger to others.

That was my thought process and how I feel about it now for myself.
577132 tn?1314266526
Here's my process:

When I was first diagnosed there was no treatment for a Geno 3 with normal liver functions in the country in which I live.  That was about 20 years ago.  So I ignored the fact (denial) that I had a disease and went about life as normal.  

I was largely asymptomatic (I thought).  Unbeknown to me the greatest effect the HVC was having on me was psychologically - affecting my sense of self esteem and my ability to participate fully in life and ultimately my sense of happiness in this world.

Eventually I became very depressed but never attributed it to Hep C.  I also continually worried about passing it on to my loved ones, especially the young children in my life.  That freaked me totally and the sight of my own blood would cause anxiety attacks.

After a series of events in my life I realized I had to make some changes if I really wanted to be happy and that I had to address the disease.  In 2003 I treated and it didn't work.  Once again I was told there was no treatment for me. Difficult to accept but I realized that by treating, despite the failure, I had come along way to overcome many of the aspects of how the virus was affecting me mentally.

Five years later I got the chance to jump on a trial for non-responders, and I seized that opportunity.  It took me about 5 minutes to make up my mind and now I am in week 33/48 and the going has been rough sometimes.  In my roughest moments, like the past 5 days, I have truly wanted to give up and I have truly questioned my decision of WHY to treat especially when we read such persuasive reasons against treating.

But today I am happy I decided to treat.  It's not just about me, it's about everyone else that has HCV also.  By doing the trial I have an opportunity to contribute to the greater good.  Whether I achieve SVR or not (and boy do I hope I do) I will have helped in the search for better treatment.

In terms of the long term side effects, well I figured that in 20 years I might well be facing ESLD or HCC so it seemed that risks were similar if not a little better but that by treating I had the option to beat it rather than passively wait for it to destroy my life.  The percentage risks of long term sides and HCC seem to be more in favour of treating now than not. And I have never felt better about myself both times I have treated despite the difficulties.

As a person who has lived with this disease, and the knowledge of having it, for 20 years the time was right for me.  I have been told about all the new and wonderful research and new drugs for 20 years now, and there is still nothing approved apart from Riba & IFN.  Who knows whether these new miracle drugs are going to market or not and I'm not getting any younger....

I want a chance at life without being controlled by an alien in my body which has governed my every decision for the last 20 years...

Best of luck with your decision!

Epi :)

338734 tn?1377160168
I'm well down the "slippery slope" that Jim describes. I'm at week 76 with eight more to go. My situation was a little exceptional and I do not regret the decision to treat, though the original 48 weeks has turned into 84 weeks.

Jim describes the slippery slope pretty well! I have so much invested that it always justifies longer and longer treatments. If you do treat, you should be prepared for at least 48 to 72 weeks. A 24 week treatment for Geno1 is the exception more than the rule.

I too, think your doc is a little optimistic. Since you are only at stage 1, you might do yourself a disservice by starting the TX drugs immediately. It may be better to wait for a newer treatment. I have been told that Telaprevir will be approved in 2011. You and your doctor need to make the TX decision.

IMO, an important caution is do not wait too long for TX and CAREFULLY monitor your liver condition while waiting. HCV generally progresses very slowly, but not always. And just because it progresses slowly for a number of years does not mean that it will continue at that rate. For sure you have time to wait and not hurry into anything.

While holding to the caveat above, I guess I am saying I would wait awhile and make sure I could make the most informed and best decision possible.

FYI: I have continued to work while on TX, but it has been difficult and my work has certainly suffered in quantity.

Best luck!
408795 tn?1324935675
I just tx'ed for 5wks worth and it was totally bombs away on my psyche, that interferon is very powerful and one should plan well for the unexpected.  Between the anemia from the Riba and the mind games from the interferon I didn't stand a chance.  I'm sure you're healthier than I am as I've had problems with anemia in the past and your numbers look way better than mine did.  Think about it and plan well, God Bless
Avatar universal
I am fairly new on this site too. I am just starting to learn of things I never even heard of or knew anything about! I am a geno 1a my VL is 2,880,000 and I am stage 4 in last stage of liver damage. I have cirrhosis, and my next step besides tx is possible getting on a live TP list. altho I have to try a course of tx before that. That is the law I guess with HCV. I just wanted to put my 2 cents in here. I NEVER knew I was this bad because of Drs saying my liver enzymes were always on the normal/high side. I got them done twice a year. FINALLY due to developing other illnesses, and chronic pancreatitus Drs decided to further explore what was going on with my HCV. I mean I was in liver failure due to an OD 2 years ago and came out o f it ( miracle) and watched my liver enzymes go back to normal with in a year!! I never knew any better because I listened to what I was being told by DRs. My ignorance of not educating myself well in this disease did NOT pay off well. Now I am very sick. I am always tired. I am always in bed. I have no energy at all, I get every virus/flu/cold that comes within 100 feet of my house, and I haven't even started tx yet! I do have a history if depression so you guys are scaring the, as my son would say "H E double hockey sticks out of me!" I finally got serious when I saw a rheumatologist for my RA, which informed me that my RA and fibromyalgia were possibly caused by this HCV. Then I went to my primary and insisted on more tests and a GI specialists! Altho I do have many other auto immune illnesses, and add them together Im in bed most of the time. I make myself get up and go out to my patio and read to get fresh air. On good days I walk my dogs to get some physical activities. Which wipe me out! Just walking my  dogs a couple of blocks. I am telling you all of this because I would hate to see anyone have to go through what I am now. If I would have been educated I would have done this 10 yrs ago when my enzymes started to show a little too high. I have had HCV right now this year exactly 20 yrs! I know the day I got it. I had 6 weeks of jaundice and sickness like I never had before, and then it went away and so the symptoms were gone, so I did not think of it. When I saw my DR I said I have HCV they said ok, did some LFTs and said I was fine. I was told over and over by so many Drs " your LFTs are elevated, but that is to be expected because you have HCV" " You will always feel a little fatigue and some minor symptoms for the rest of your life" So I just stopped thinking about it and never could understand why I was getting sicker and sicker and sicker. By 28 yrs old I was so very sick most all of the time. Now I am going to be 38 in Feb and this is my life.........I don't know if I would have treated back then with little I knew, but if I knew what I do now, my wish is that I could have had the choice of treating before I got as bad as I am now. Now I am so bad I am thinking of not treating because of all of my illnesses added together and my mental state of mind, I am afraid to do it. My liver is in such bad shape my GI said I will most likely need a TP anyway in the near future, but I can't get one without trying tx first? These are the thoughts I go thru day after day as I am awaiting my appt next month to tell her yes or no............
I would suggest you being as healthy as you are DO IT!!! Treat!
Is there not anyone else in here that does not know of the trial in Port Orange, Fl that they are adding an already FDA approved drug that is used for RA and MS to the PEG/RiB called Remecade? My Dr is  taking part in the tx trial and it is right in her office. This drug is already out. It is just used for other autoimmune diseases. So they have found for the Geno 1s the concoction of the meds togerhter is keeping geno type 1s HCV free for over a year or more already!! That to me sounds liek a better deal. If I decide to treat. Im doing the trial and praying I get the drug and not the placebo. BUT The trial is in it's last stage, it has already been approved and will be out in 2010. So it will be interferon/ribivarin/remecade...........I have mentioned waiting the year to be sure that I KNWO I am getting it, with the chance in the trial of getting a placebo. I also have  RA so I think that will greatly help the joint pain I already have and that gets worse through tx..........
Happy New Years Everyone Much Peace and Blessings to all.
Jenn

Avatar universal
I, too, am a 1b and I am 54 years old and I am a paralegal.  I most likely have had Hep C my entire life.  I started TX on 9-5-08 and I take my shots on Friday night.  Technically, I have not missed any days of work since starting TX, however, I made a decision prior to starting tx to use my accrued vacation days one day at a time by taking Mondays off.  That way it gave me a 3-day weekend to recover from the shot.  That worked out pretty well for me for the first 2 mos or so but then my sides changed so that my worse days were more like Tuesday or Wednesday so I changed my vacation day to Wednesdays each week.  Now I'm in my 17th week of TX, and I'm going to start working 5 days a week again as I think I can do that now.

Since you are a lawyer, I will caution you that you probably won't be on your best game during treatment.  Not to let that discourage you from treatment but just so you know going into it that treatment slows us down both mentally and physically (some more, some less).  I am able to do my job but, luckily, I'm currently mainly dealing with medical records and medical research, etc. and I do not have to do what you do in court, etc. with people face to face.  That I would find hard to do.  I do some witness interviews by phone and I currently find them very painful because I need to write down everything to make sure I don't miss a beat and I hate it when I have to stop and try to think of a word in mid-sentence.  It doesn't happen a lot but it does happen.

I, too, find your doc overly optimistic about the possibility of a 24 week tx.  I was fortunate enough to get an undetectable viral load at 4 weeks and my starting viral load was only 30,100.  Even with those great statistics with me, my doc still won't give me the ok to stop at 24 weeks.  He tells me it's too risky and that I should continue to 48 weeks.  I'm going to approach it like this...if I feel like I'm handling the sides okay, I will continue to 48 weeks or as close to that as I can, but if the sides get horrible to a point, I will stop at 24+ weeks and take my chances with SVR and hope God is with me on that.  

I too had minimal liver damage but I still decided to treat because I'm the kind of person who cannot just sit and leave it to fate.  I had to try to help myself.  Now that I have started TX, I am very glad that I did but, if it doesn't work, I will NOT do it again until there are better treatments with better odds for us who are 1A and 1B.  That's not because my sides are so horrible but because I gave it try by doing treatment the first time and I figure I owe it to myself to wait for better treatment for the 2nd time - if, God forbid a 2nd time is necessary. My husband, on the other hand, does not have Hep C and he said if he had to make the choice, given the odds I was given, he would not have chosen to treat.  It's just the difference between us.  I could NOT not treat and he would not treat.

Treatment is not fun but it IS DOABLE.  As long as you know going into it that you might have to makes some changes in your schedule, etc. you can do it.
648439 tn?1225058862
I am a 1b, 55 years of age, low viral load, no damage to liver at all, RVR at 4 weeks, waiting Week 12 results.  If they are UND I am considering seriously finishing at 24 weeks, because I fit all the criteria.  This is instead of a general opinion that it would be better to continue with the 48 weeks because I may have  a better chance of SVR.  However, I am over it, the treatment has been hard and although I managed to complete the first 10 weeks of treatment and go to work, I do not have the stamina to work and complete 48 or even 24 weeks of treatment.  So it will be sick leave, leave without pay and mortgage worries.  If I do not SVR I will repeat treatment in a few years.  I have so little damage I feel I can do that.  However, I am glad I committed to treatment.  I have discovered some things about HCV  that means it is the best thing for me and my future health to be clear of this disease.

As far as work goes, I am a lecturer and find I cannot maintain the level of communication and rigour to continue to do that well.  I find I am better off doing computer based management jobs that require little one on one communication skills and few daily deadlines that I must meet.
232778 tn?1217447111
I treated, and have not regretted it. I think even just starting this thread indicates you are going to treat - you will forever wonder if you don't, it will eat you up.

I am a chartered accountant. I treated twice (as in acute stage)- the first time without Riba, and just Pegasys. I found the symptoms on that fine. The second time (after mono failed), with Riba, knocked me around a bit. I was able to work, but it was hard, and towards the end, I was making mistakes. I decided to stop work with about 3 months remaining of treatment.

As a trial lawyer, I think you will need to be careful - and get the support of your employer, and colleagues (if they know about your condition). You need to keep open the option of taking some leave if you need it. Hopefully you won't, mentally it is better to keep working. But, some of the potential side effects (especially iratibility, tiredness and brainfog), if you get them, may make it a wiser decision at some point to stop work, rather than make a mistake.

Just my 2 cents. Good luck on your journey.
233616 tn?1312787196
you've had so much good advice where to add.

well for starters it sounds like you know 55 years is a time when the stages could start into a more escalated progression...otherwise why even consider.

I agree with all above, you could get lucky at 24, or not and need to go 72...that quite a spread.

for my money I would only treat now if you could convince your doctor to pretreat you with Alinia and antideppressants etc. AND if he would do the rescue drugs for low blood  as sson as possible.
you can PM me for the research on Alinia (adding 10% at least chances), which added to the 80-90% cure rate already for 1b should give you as good a chance a teleprevir.

decide if you can afford to take a lesser role and delegate more. That will be needful whether you treat now or in 2 years. It's just a bump in the road to stop a virus from chewing up your liver.
If I had had the virus as long as you, I'd give considerable weight to treating sooner simply because even at low VL the virus still pools in spots in the liver and this is how and where the liver cancer gets started, the continual exposure to virus and effects of fibrosis finally turning tissue necrotic. This is the big concern as liver cancer is now the fifth largest killer of men in the USA. Even if it meant hiring more staff or taking on a smaller case load, I'd want the virus gone before it could give the HCC a chance to get going.  
Hard choices we all know, but weighing the pros and cons objectively, as if maybe for one of your clients, might help you come to the safest course of action to get a full reprive.

mb

mb
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