Duration of peg treatment?

[ldfeat]

I have been taking Pegintron since 1994 to treat my HCV. My doctor is has me on a "maintenance program" becasue it seems to be keeping my liver functions within a tolerable level (sometimes normal).  My insurance company now says they don't want to pay for the peg anymore because it is only recommended by FDA for 48 weeks.  Have you heard of this problem before and/or do you know of others who have been on peg longer than 48 weeks?  Any recommendation on how I should proceed?  Thanks

Larry

[ldfeat]

I have a 1 genotype.  Thanks

[sunspot]

Unless I have severe brain fog, I don’t see what your Genotype is. If you are a ‘2’ you have a great chance of ridding your body of HCV with only 24 weeks of combo therapy.  Then you can quit your 13 year run of shots.
If you are not a ‘2’ and don’t want to treat for 48 weeks, at least keep up with the new drugs that are sure to come on the market in the next few years.
I would for sure try to enroll in a Telaprevir trial at Shands.
Best of luck on whatever you do.

[ldfeat]

Just FYI, I talked to the FDA and they stated that they do not mandate a time limit for Peg.  My insurance company is hem-hawing now because they initially claimed that 48 weeks was the FDA limit.  Now they state that 48 weeks is "...their policy."  They requested a "peer-to-peer" discussion with my doctor, who will call them.  Stay tuned.

Larry

[ldfeat]

The lable says "PEG-INTRON 80MCG/0.5ML REIPEN (peginterferon alfa-2b)"

[FlGuy]

You didn't mention the maintenance dose you been on.  Is it PegIntron or Pegasys?

[ldfeat]

test

[ldfeat]

I should also remember to report that I did go to Shands about 10 (or so) years ago and based on my historical blood tests (liver functions good when on, bad when off), they concurred with my doctor's maintenance strategy.  Thanks for all the comments.  I have never talked to others with HCV before and this is really interesting.  I'm not sure what I'm going to do yet.  Hopefully my doctor can convince my insurance company to continue the peg.  I have recently (8 months) started drinking some Chineese anti viral tea that I got from my acupuncturist, so maybe that will help.  I can't think of the name of it right now, but can report back if anyone is interested.  I haven't verified it's effectivness yet though.  Anyone else try this?

I also might add that I feel very little reaction (flu-like-symptoms) from the Peg.  I did when I first started taking Interferon for about a year.  But three motrins fixed me right up.  Hardly anything anymore.  My doctor says my body tolerates it very well.  Thanks for all the replies!

Larry

[sunspot]

Some recent posts have mentioned some hep doctors names at Shands.

Hmmm, drive 150 miles to Shands “through” Orlando (Ugh) or go to UM at 230 miles. That’s a tough call. At least Coconut Grove has good seafood.
I think I would fly to Miami for the top doc, fibroscan, Café Cubano and the seafood, in that order.

[mikesimon]

I misunderstood Jim. I thought he started in 2004 and mistakenly said 1994. Now I see that he said he has been on some type of interferon since 1994. That is incredible - I am in awe of the fact that his insurance co. has gone along with this treatment until just recently.  I was kidding - sort of - but if, in fact, he has been on interferon for 13 years I agree with you completely. I didn't even know that maintenance treatment was even a thought back then. Mike

[FlGuy]

No insult to Idfeat intended, but anyone who can be on IFN for thirteen years and still put together lucid sentences is a pretty tough cookie.  Man, that's a lot of tylenol.

[jmjm530]

Never know when you're kidding or not so I'll take this as one of your "dryer" jokes :)
---------
But in case you're not -- and for those new to this -- of course I was referring to the fact that "Idfeat" has been on interferon for what appears to be THIRTEEN YEARS STRAIGHT. So, yes, I hope I am "scaring" him enough to get a second opinion as to whether this course of therapy -- without biopsy -- makes any sense.

-- Jim

[FlGuy]

Several of us here in Florida have seen the docs at Miami.  There a few months wait to get in, unless a crisis exists.  It's worth the time and effort.  Plan accordingly.  Shands is the hospital that is affiliated with UF.

[mikesimon]

Don't go scaring him about interferon. You know better than that - you took enough of it and look at how well you're doing! Mike

[jmjm530]

Ultrasounds only are good to screen for liver cancer. They are not very good at telling you how much liver damage (fibrosis/cirhossis) you have. The Miami center mentioned has some of the best docs in the country.

But don't wait too long. Not knowing the actual condition of you liver can have serious consequences, not to mention the potential harm of the interferon you're taking.

-- Jim

[ldfeat]

Thanks to all.  I might add that I have had ultrasounds annually that show no damage.  Miami sounds interesting.  Thanks again.

Larry

[jmjm530]

Using Mike's words "unless you have omitted relevant information" -- I must again repeat that I'm somewhat in shock that you've been on these potentially toxic drugs for so long without knowing the exact condition of your liver; and without being offered alternate treatment plans. Again, unless something omitted, really time to see a real Hep C specialist.

-- Jim

[mikesimon]

I agree with Jim completely. Unless you have omitted relevant information regarding testing, previous treatments and diagnosis I can't understand why you are on maintenance therapy. Something just doesn't fit here and I think Jim is right to advise  you to see a liver specialist as soon as possible. I wish you luck. Mike

[jmjm530]

Just so you know, we have had a number of stage 4's (cirrhosis) treat successfully with the current drugs. And unlike what was thought in the past, successful treatment can halt or even reverse liver damage. But you don't even know you're a stage 4. For all you know, you could be stage 1 or 0. So why then keeping putting the interferon into your body. Mainteance is generally recommended only for those with advanced liver disease, and now even that is being brought into question.

[jmjm530]

Idfeat: My doctor (Gastro) and I went round and round on this and it came down to what could be done if a biopsi showed my liver was trashed.  Answer...nothing.  
-----------------------------------------
I've read some very questionable medical care over the past couple of years, but this leaves me speechless.

First, you don't know what condition your liver is in until you do a biopsy. Second, even if your liver is "trashed" treatment should not be necessarily ruled out.

Do yourself a major favor, collect all your records, and head down to Miami and try and get an appointment with Dr. Eugene Schiff or one of his collegues. At least for a one-time consult. Not only are they up to date on all current trials, but they have in their office one of the few Fibroscan machines in the country. Fibroscan is a non-evasive device which basically does what a needle biopsy does -- tells you how much liver damage you have.
Dr. Schiff contact: http://www.med.miami.edu/med/hepatology/chief.asp

Not familiar with Shands in Gainsville, but if you can't get to Miami -- and I think that's your best bet because of their reputation and the Fibroscan machine -- then try the Shands Clinic that "FlGuy" recommends.

But whatever you do, get a second opinion from a liver specialist ASAP. On face value, you have not been given the best advice.

-- Jim

[FlGuy]

You can probably get some good medical advice at Shands in Gainesville, they have a hepatology clinic there.  In addition, we have several members who live in your area that may be able to give you some local perspective.  Hey, you had quite a show there yesterday!

[ldfeat]

Yes, you are correct.  Peg wasn't around in 1994.  And Yes I meant 1994, but use the term peg loosly.  I started out on Alpa Interferon (three times a week), then went to Peg when it came out.  

I have never had a biopsi.  My doctor (Gastro) and I went round and round on this and it came down to what could be done if a biopsi showed my liver was trashed.  Answer...nothing.  So what good is the information other than knowing and nothing can be done (short of transplant).  I have had regular blood test every six months to include cancer markers which showed negative (so far).
I would like to learn more about "...newer treatment protocols have evolved with the current drugs..."
I work in  Melbourne Florida and live in Titusville.
Thanks for all the responses and advice.  I will stay close to this informative board.

[mikesimon]

Peg wasn't around in 1994. I think it became available in 2001. I treated in 2000 and only regular interferon was available then. Mike

[jmjm530]

You do mean "1994" and not "2004"? I've made that mistake a few times, esp on treatment. I ask because haven't really heard of anyone on mainteance that long.

[jmjm530]

Larry,

Without knowing your history and stats, I'll just offer some general advice, and forgive me if I'm telling you things you already know and perhaps discarded.

If you've been on mainteance for 13 years, I'd definitely consider getting a second opinion at this point. Or even a third opinion. And I'd get it from a liver specialist (hepatologist).

No need to mention the advances over the span from monotherapy to combo to combo with a pegalayed form of interferon. But over the past few years, newer treatment protocols have evolved with the current drugs and newer drugs like Telaprevir are showing extremely promising drugs in trials. Trials you may even be able to take part in. What's more, the whole idea of "maintenance" is being reviewed, and I believe a paper is either already out on this or will be later this month. It may turn out that mainteance may not work they way many have hoped.

As you probably know, normal liver functions (ALT,AST...)don't necessarily equate with low liver damage and higher liver functions don't necessarily equate with high damage. I assume then that you have had periodic needle biopsies to find out exactly how much liver damage you have.

Going back to the second or third opinion. Best to get one from a liver specialist (hepatologist) as opposed to a Gastro. Especially with someone who has been on mainteance for so long. You can usually find hepatologists at your larger, teaching hopsitials. If you don't mind posting about where you live, maybe someone here can suggest a liver specialist.

All the best,

-- Jim