SHOULD I BEGIN TREATMENT FOR HEP c-HELP PLEASE

[wklaw]

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

[fretboard]

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

[Ryansmom17]

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

[meakea]

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.

[jankar]

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.

[moahunter]

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.

[merryBe]

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