New Drugs. New Treatment Decisions.

[jmjm530]

Recently, someone at another discussion group asked me how I thought the newer protease inhibitors like Vertex should affect our current treatment decisions. Here’s an edited version of my answer.
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That's an excellent topic for discussion!

"To treat or not to treat" has always been a controversial issue.

Nowhere is it more controversial than genotype 1's with no or minimal liver damage, i.e. stage 0 or 1.

In this group, doctors are split. Some advocate treatment, the idea being you have a better chance for SVR if you hit the virus early in the cycle, when you're younger, healthier, and when the liver has little or no scarring.

Others advocate a "watchful waiting" approach with regular lipid monitoring and follow-up biopsy in 3-5 years. The idea here being why expose yourself to the side effects of these powerful drugs when your liver is still in decent shape.

In this debate, I tend to favor watchful waiting, although I respect anyone who decides to treat as long as they're making an informed decsion, weighing the pro's and con's. The only right answer is the one that's right for you.

That said, the new protease inhibitors in trials -- like Vertex --  seem to be shifting the "treat or not to treat" paradigm in this select population toward "not to treat".  Because even if we're off with the project 3-5 year release date,  this group still has time to wait.

PART II WILL SHORTLY FOLLOW...

[couldn't think of a nickname]

Ice, it sounds like you are in pretty good shape, considering. I am 1b, have had it for 21 years from a blood transfusion (21 units actually), but the last couple of years my enzymes have been elevated, and I do have a pretty good dose of muscle aches/pains. I had an ultrasound of the whole region 5 years ago and nothing of interest was mentioned to me, so apparently, things were fine. I also had an endoscopy to remove a gallstone stuck in a duct, and again, the GI didn't mention anything of note to me. That is my profile, and I am choosing to wait. It won't be 5 years, more likely 3 for a better option (might be just under 3 now). The sides from current treatment combined with the time, and the 50/50 chance is what has kept me from treating. My PCP tells me he thinks it's ok to wait as long as my platelets are good. He says that is more important than VL or enzymes, and that when liver disease advances, platlets drop slowly over time. My platelets have fluctuated a bit, but last Feb., they were 224,000, which is higher than last year even though my enzymes were up.
Whatever you decide, good luck. This decison is a very individual thing, and there is no right answer.

John

[go-girl]

I was just @ "Hepatitis Central" there are some good articles on the left hand side,scroll down to almost the bottom there is an enrollment taking place to do with Shcering Plough Canada for a new drug to take with interferon, interesting articles to check out.

[jmjm530]

It doesn't happen to everyone, but just be prepared. Anemia, within the first four weeks or so, is the number one reason people either have to stop treatment or have their ribavirin dosages reduced. Either one can dramatically affect your chance of SVR. And even if they don't stop your treatment, you will not have a lot of fun huffing and puffing around the house.:)

It's good your doctor's office is taking weekly blood counts. The results are usually in within 1-2 days. Ask that they call/mail/fax you the results as soon as they're in. In my case, I have it noted on my requistion form and the blood results are faxed to me directly by the lab.

Fatigue on tx is not only caused by anemia. The interferon can also wear you down.

-- Jim

[cuteus]

I am not very good at explaining technical stuff, but hemoglobin is how the cells transport the life giving oxygen to all the organs. Less red cells=less hgb= oxygen deprivation, which can't be a good thing, right? Riba destroys red cells at a rapid rate.
check this article on the importance of treating anemia, sponsored by the makers of Procrit of course, but interesting to know;
http://www.mydna.com/resources/news/200407/news_20040715_bbanemia.html

[NYgirl]

Thank you I get it. I am printing this out so that WHEN my doctor thinks I am being egotistical and know more than HE he will have reasons to LISTEN to me.

I do not believe doctors are NOT fallible...and I want to be armed and prepared.  I want to get better...much more than he wants me to get better if you know what I mean.

Thanks for the link.

[jmjm530]

I have a feeling Cuteus' is out binging on Champagne celebrating her SVR so I'll jump in. :)

One of her points has to do with agressively treating anemia on treatment.

To oversimply, anemia is when your hemoglobin drops to ten or below, or when you have more than a two-point drop from your pre-tx level in less than a couple of weeks.

So, let's say your hemoglobin now is 13. If it drops to 11 after two weeks or so on treatment, you may start feeling very fatigued, dizzy when you stand up, even out of breath. It's anemia caused by the ribavirin.

What you want to do is first make sure your doctor does a hemoglobin test at least every other week during the first 12 weeks of treatment. I had mine done weekly. That way you will know what is going on.

If you do develop anemia, the solution is to treat it with weekly injections of a drug called Procrit. It's really a miracle worker and in most cases will get your hemoglobin up to par within 2-4 weeks. Unfortunately, many docs are too slow on the draw and people suffer the symptons of anemia needlessly, or worse -- they have to reduce their ribavirin dose or even go off treatmen.

Vigilant monitoring of your hemoglobin level and early intervention with Procrit is what you want. This is something I recommend to everyone to discuss with their doctors prior to being treated.

-- Jim