chronic hepatitis c viral load

[danity]

a year ago this month i was diagnosied w/chronic hep c. type 1a, viral load 4430000.liver biopsy showed no fibrosis or cirrhosis, but mild to moderate degrees of inflammation. gastro doc showed no concern & said to come back in a year. my reg md did new blood work last week & viral load came back @ 8370000 twice the amt of viruses from last year. i dont have an appt w/gastro doc for another two weeks. should i be concerned abt this change. i wanted to take treatment last year because i did not like the idea of having this virus in my bloodstream but gastro doc said no. i feel like viral load would not have doubled if treatment had been started last year & now im scared. i feel so tired all the time. would really like to hear some feedback on this please.

[cuteus]

I was diagnosed at 51 also, had mild damage and low vl, my first GI had no interest in even doing a biopsy due to my normal liver profile. After realizing that I wanted to know everything about my liver condition I went to a hepatologist, she immediately ordered a biopsy and left it up to me to treat and to choose the meds I wanted. My train of thinking, at 51, after almost a year tx would put me at 52 or higher, if I need to re treat I would be even older and the tx would have been longer, I did not want to worry about infecting anyone accidentally, and I did not want to chance that my damage might progress faster than others. I figure I should give it a try, give it my best shot and if tx got to be too debilitating I could stop.  PCR was still negative at 6 mo post tx. so in the time that I would be doing the wait and watch, I went through tx, finished it and looks like I cleared the virus for good. I am happy I did go for it, rather than live with the worry.

[bobbyullc]

I HAD A BIOPSY 6 YEARS AGO AND WAS A STAGE 2 AND DECIDED NOT TO TREAT. NOW I AM AT STAGE 3 AND MUST TREAT. I AM GLAD I DID WAIT AS THE TX HAS IMPROVED DRASTICALLY IN THE LAST 6 YRS.(ONE SHOT A WEEK WITH IMPROVED SUCCESS)AND HOPE IT WILL IN THE NEXT 6YRS.IT IS A PERSONAL CHOICE YOU MUST MAKE BUT DO IT INFORMED NOT OUT OF PANIC. WITH 2% OF THE US HAVING HEPC I FORCAST A GREAT DEAL OF RESEARCH FOR A CURE. HANG IN HTERE.
BOBBY

[avidreader]

My insurance also doesn't like to authorize (pay for) Prilosec or Prevacid. They switched me to Protonix which at first didn't seem to work as well, but after 3 weeks I was fine.

[jmjm530]

Fisheress,

I understand you're in a study group and that might dictate when you have to start treatment. But, if it's at all possible, see if you can delay tx until the reflux is under control. If you don't have a lot of liver damage (stage 0,1) then you could always wait for another study group down the road. Your doctors may belittle the reflux, but the combination of reflux and tx is not a lot of fun

Thanks everyone for sharing their reflux meds/experiences. I'll keep trying different stuff until something works or I don't. :)

-- Jim

[Fisheress]

I too am on Acidphex 2x a day.  Don't think it's working for me.  Think I will see if the doc will change me to Prilosec. As i explained before, I feel as if I have a softball in my chest and hard to get food down.  I try not to eat and then go lay down for at least 2 hours.  My tummy feels so bloated. I need to get this healed before my treatment starts in a month.  Glad there was a thread on this!

Godd day to all!
Fish

[carpedi]

I just returned from my 5 week meeting with my doc and she put me on prilosec for reflux. She said the Riba is strong enough to cause ulcers and very irritating to the stomach and esophogus. She told me to take 1 prilosec 1/2 hour before eating first thing in the a.m., then eat something with fat content 1/2 hour before the morning riba. At night she suggested pepcid with dinner and sleeping with head and upper back at a 30 degree angle. So far (3 nights) it has worked beautifully and I think it may be helping with the nausea a bit too. This is just too much fun!!!

[1fairygirl]

Jim,
Good luck with your new approach.  I hope you find something to give you relief!  I also had tried all the other meds.  I had to get a special waiver from my doctor to get the Prilosec.  Insurance companies don't like to pay for it unless it's the only alternative.  
It's so nice to not have to worry about what I eat or when I eat any more.  Hope you get there, too, Jim!  Also hope you're having low side effects this weekend.  
Smiles, Sue

[Magnum]

Sounds like you need a different gastro.

Magnum

[jmjm530]

Thanks for the advice. I don't think I tried Prilosec but I did try several other PPI's including Aciphex twice-a-day for four months.
Still had a lot of reflux problems including sides from the Aciphex.

Lately, I've been trying a bunch of different things including challenging my system with "normal" eating and some Gaviscon at night to calm things down. The "idea" here is to see if my system can heal itself although I don't think the riba and peg are helping matters much. :)

If none of this works, I'll probably have a dual-probe study and then go back on another PPI like Nexium. Sometimes one brand will work better than otherswith some people.

The type of reflux I have is called LPR with most of the symptons above the neck -- hoarseness, sore throat, ear/face pressure. Don't have the typical heartburn.

I'm so happy you found a solution with Prolosec. I don't think people who've never had this problem can understand how bad reflux can be.

-- Jim

[1fairygirl]

Jim,
If you're still having trouble with GERD, have you tried Prilosec for it?  I used to have GERD, they thought they were going to have to operate.  I had esophogeal ulcers so bad that they thought it was going to be cancer.  Turned out to just be from the GERD and I was put on Prilosec to settle it down enough to operate.  Well, I was on Prilosec for two years and it cured me and I don't get reflux any more.  I am on Prilosec any time I'm on meds which can cause stomach upset, including now while on treatment.  My insurance will no longer pay for the prescription Prilosec but will cover the over the counter.  The OTC is the same, they just give me two per day instead of one prescription.  I know this saved me from surgery and worse.  So you think it could help you?

[danity]

thank you all so much for your help,experience's & information. it's nice to know that there's people out there that know how i feel now & can advise me on what i might be up against later.

[jmjm530]

Given you're individual stats, I'd say it would be closer to 70/30 or maybe 60/40 in favor of not to treat.

That said, you're point about age is an excellent one. I had close to perfect health for the last five years, and then one month before treatment developed a serious case  of GERD (reflux). It has made treatment very difficult for me.  Had I treated a year earlier my sides would have been more tolerable.

On the other hand, your case is a little different. I HAD to treat now because I'm a stage 3. You have time and can gamble on two probables. Probable 1 is that your hep c will progress very slowly. And probable 2 is that by the time you reach stage 2 or 3 there will be better and much more tolerable cures that will make inteferon/ribavirin look as truly barbaric as many of us know it to be. But these are "probables" -- not guarantees -- and that is what makes the decision a difficult one.

I wouldn't stress to much over the decision. The clock is running very slowly for you. Do as your doing and collect info, talk to people, and hopefully one direction or another will seem right for you.

-- Jim

[danity]

Thank you jmjm 50 for the website. It was interesting & seems that still about 50/50 on rather to treat or not. I do know that I will be doing a lot of research between now & my next doc appt. / to triole, my age is 51. From what I understand if you decide to seek tx age is a factor. I guess i'm afraid if I don't seek tx now I won't be able to tolerate it later if my hep c cont to progress. It

[friole]

There are lots of reasons to treat (or not).  Viral load is only one of them.  I didn't see how old you were.  That is a big factor to me.  I am 57 with little liver damage (grade 1, stage 1) and decided to go ahead and tx.  Didn't want to wait 3 years for another biopsy to say I really needed it.  I also think I was getting more tired than I should.  At any rate, you have found a good place to find out information and share experiences.  Welcome

[jmjm530]

I was looking for a recent "To treat or not to treat" discussion in those with little or no liver damage, which Dr. Eugene Schiff took the "not to treat" approach. Couldn't find it, so this earlier article will have to do and it makes many of the same points: http://tinyurl.com/8cp5w

Just keep in mind that since this was written, newer drugs have gone into trial and less invasive liver-staging tests like Fibrosure have come more into practice. Both give more fodder to  the "not to treat" argument.

Whatever you decide, it will the right decision as long as it's an informed one.

-- Jim

[jmjm530]

Viral load can fluctuate wildly in both directions and is not indicative of liver damage.

Your doctor is advising you to defer treatment based on your difficut-to-treat genotype and lack of liver damage. His recommendation is sound and one in which I agree. This approach requires periodic follow-ups, including a biopsy in another five years and possibly "virtual" biopsies (Fibrosure tests) every year or two. Newer and better treatments are hopefully no more than 3-5 years away.

Read carefully through this web site and other hep c sites, and you will find that many of us do not glide through tx but have severe side effects, many of which last beyond tx and some of which may be permanent. Some have it easier than others, but you never know in advance where you will fall and what your risk will be. IMO it  makes more sense to take those risks when you have a lot more at stake, i.e. severe liver damage. This is not your case and that is why your doctor is asking you to take a watchful watitng approach.

That said, to treat or not to treat stage 0's and 1's, is controversial among even the best doctors, with good points from both sides. A lot depends on your individual situation and in the end what you want to do.

There certainly is no rush for you to make a decision and the best thing is to read as much as possible on this site and others and then make the decision that fits you best. A good site to muck around is "Projects In Knowledge". http://www.projectsinknowledge.com/

Going back to viral load...it can also work both ways. My viral load was over 30,000,000 about three years ago. Four months before tx it was 16,000. The day before tx it was 1.5 million.
It really does fluctuate both ways.

-- Jim

[1fairygirl]

Dainty,
I have to agree with Magnum.  As soon as my gastro knew that I am type 1a, he started talking about treatment.  Now it sounds like you are starting to have symptoms from your virus.  Good luck with whatever you decide to do.
Smiles, Sue

[indyjo]

Hi. I had a viral load of 250,000 when I was initially tested. I started tx a year later with a viral load of 3,000,000. The doc said that this was probably stress related and not an issue. But...I have read that the higher the viral load the harder it is to clear.