Gish changing IFN dose at week 30

Hi Guys:
As you know I've been toughing it out with lots of infections lately, now with pneumonia and some kidney problems as a result of the seventh course of antibiotics.

I approached Dr. Gish about stopping early.  Told him everything.

IFN is the culprit for me.

He told me that he wants me to reduce the IFN dose by half to 90, leave Riba the same and continue for the treatment duration (48 weeks).

Stats:
Geno 4
acute
have done 29 weeks at full dose IFN, 1400 riba
medical history on tx as outlined ad nauseum in medhelp archives
UND at week 2 (<50 PCR) Week 11 (TMA <5), Week 18 (PRCR <50), week 24 (TMA UNDETECTED)..

I guess the thinking is if i don't break through at 90 IFN i won't break through.  ??? Why not just stop?

Thoughts?
Deb

[gauf]

You had an RVR so I would consider it myself, BUT I would to get a large concensus here first.  Sounds like you are really going through the ringer, admire your courage.

[PSP-n-Me]

Gish is a very well respected Hepatologist - if he says that's what you should do --------

[mikesimon]

Don't wait for any large consensus here as Gauf suggests. We're not really doctors even though at times we act like we are. You've got a good doctor so follow his advice. This stuff isn't easy and at times we just have to do it anyway. Mike

[jmjm530]

In addition to his excellent reputation, Gish has taken a very agressive stance with you from the beginning. So if he says drop the INF dose, it tells me you should drop the INF dose. That said, I would request monthly sensitive PCR's to make sure there won't be a viral breathrough, which I doubt very, very much. As to "stopping" -- thats for you and Gish to hash out as I'm not up on the latest geno 4 tx protocols.

Be well,

-- Jim

[jmjm530]

last sentence should have read in part: ..."I'm not up on the latest geno 4 *acute* tx protocols.

[orphanedhawk]

When my dosage was dropped, Dr.F., Gish's associate, had me do a PCR done after 3 weeks to be sure the virus hadn't come back.
I began to feel better just having less of the interferon in me. E-mail Gish and ask him about a PCR. Then if you are still clear, you can ask him what he thinks about stopping early.

[mikesimon]

Deb did ask about stopping and he advised her to continue for the 48 week duration. Mike

[debnevada]

I actually have to give all props to Gish. I was running this up the flagpole with my buds here.

Jim,he sure has and he knows it. So I'll drop the dose.

In my followup email i was told to get a TMA at 4 weeks at new dose.

I don't think ANYONE, including Gish is up on the latest geno 4 protocols.

Saundra, his nurse, called me after the emails passed between us and bucked me up a little. she told me they have post transplant patients who are on 90 mcg of Peg IFN maintenance indefinitely.

They both think that I will have less of the type of problems, ie., pneumonia and so on.

We'll see. I'm hopeful.

Thanks for support, as always, my friends.

Deb

[r4c7]

Sounds like your winning the battle hands down.  Incidentally Deb, from your previous posts, I don't believe you're a chronic hep C sufferer...but are you?

[gauf]

It's true that I am not a doctor...... but I did stay at a Holiday Inn Express last night.  
I am wary of doctors for personal reasons, but I realize now that Dr. Gish is highly regarded here. Stay the course and GodSpeed.

[Lonestar823]

Bet that brought a smile to Deb's lips.  Sure did mine. ; ]

[debnevada]

R4:  Nope, not a chronic. Acute, infected last year November 23.

Gauf:  You cutie. Wanna examine THIS?

I have to say I'm not happy about the 48 weeks but maybe I will feel better after the IFN dose goes down. I saw my internist today......the last round of antibiotics did some kidney damage but the real culprit here is, for me, the IFN.  The thing my internist ALSO said was that because this is a infection that may result in litigation, he's being extra conservative. Food for thought for those considering legal recourse.

Deb

[wyntre9]

Sounds like you're in good hands, Deb.

I WISH I could cut my dose or stop early.  :(

BTW,  This past weekend was spent on the couch infront of the tube.  Caught Red Dragon (sequel to Silence of the Lambs) and thought about you.

Feel better,

wyn

[debnevada]

i saw it too wyn!

That one is the better one, the one with ralph fiennes. much more menacing than the other one.
plus it has hannibal in it....i like that "character".  I never really had any good psychopaths, except for maybe one and he was not my patient, i just interviewed him once.

[wyntre9]

OMG!

you HAVETA tell me about it!

How fascinating!

wyn

ps - I love hanibal.  what a man!  *LOL*

[geterdone]

Hey! if this is your bottom it can only get better from here. Seems like INF is the culprit for many issues the longer we stay on it and is more prevalent for some around the 28/32 week time frame. If I remember correctly, you had a hypo thyroid before tx and has since gone hyper here recently from reading your post. I also found out that my thyroid problems came from the inf and still have present lung issues as well. If the half dose of inf helps you get better, Great! With the UND stats such as yours I am wondering why Gish is keeping you at 1400mg of riba and not lowering the dose? Did he give a reason for keeping it at 1400? Well, no matter, he’s the doc and knows best. Hope you feel better soon!

jasper

[mremeet]

I didn't see you mention what your neutrophil (ANC) count was, is that low? As I'm sure you already know, neutrophils are a type of white blood cell that fights infection. IFN is what drives them down, and if they go too low we can become susceptible to infections of one type or another. Neupogen can be used to build white blood cells back up, are you taking that? Obviously Dr Gish would have thought of that, just curious is all.

[Andiamo1]

I hope you feel better shortly.  We are on our way to Florida now, so not much access to the net for the next few days.

I am sure you will beat this.  It sounds like you are getting the best medical advice possible.

Eric

[debnevada]

I knew you'd like hannibal. Send me an email at the other place when you are up to it.

Jasper: I HOPE this is my bottom. I think Gish is keeping me at 1400 riba because i can tolerate it.

MrMeet:  My ANC is great, my H&H is great.  Believe it or not

Eric: Have a wonderful trip; I'll be thinking of you.

Deb

[geterdone]

is this crazy or what, last TSH on 08/04/07 showed I was hyper @ 0.018L / 2.58 T4 this latest TSH test now shows that I'm now Hypo @ TSH 51.839H / T4 0.067 this is a drastic swing from the last test. I does not surprise me because I’ve started gaining weight here in the last month.

The good news is that I’m still UND so far so good.

What has me a little concern are the

WBC 2.2 LOW / the lowest point so far.
Platelets 132 LOW

and the Lipids…

Cholesterol Total 128
Triglycerides 292 H
HDL Cholesterol 28 L
VLDL Cholesterol 58 H
LDL Cholesterol Calc 42

[debnevada]

that IS crazy.. in just a couple of months. well, not surprised. Let them give you the synthroid if you need it.

UND UND YEAH YEAH

Whites ARE a little low. What was your last platelet?

the lipids don't look all that bad, what does doc say?


keep me psoted

deb

[merryBe]

I don't think the INF is necesarily the culprit here. It's well known we are more prone to getting infections, as a result of being in a huge battle each day with just one nasty virus. However, boosting the immune system doesn't mean we are knocking it out (like you do with a course of antibiotics) my hubbie brought home a nasty cold last week, and mine never really materized beyond a few sneezes.
Can INF cause other things to crop up or get worse, yes, but often thats a result of a better not worse immune response, sometimes an overactive one.

the usual culprit in chronic infection is the repeated use of antibiotics.
Often the wrong drug is used, (many to choose from); and more often the patient stops taking early, or doesn't remember to take the full course, which only triples the chances of the bug coming back.
Not saying you did this, or that the docs didn't get out big enough guns...but..
look,
I'm sure Gish is very good, but it sounds like maybe he forgot to vaccinate you against pneumonia before tx?.
that vaccine, and hep a and b were the first things I was told to get, BEFORE starting treatment,
obviously we see why now.

my question is on what are you basing the INF being the sole cause of Kidney stuff?
could the 1400 riba be part of it? tolerating that much doesn't mean it's problem free.
Kidneys can develop stones as we age also, and that can also be the culprit, all drugs and disease aside. How much filtering they can do under several heavy meds varies from peoson to person.
Have you tested to see if this is the case? Stones, I mean. Whats your fluid intake like.
riba builds up too much without enough fluid...thats not good, and I was told 100 ML per day minimum to drink.

maybe your best bet would be to A. go to a kidney specialist so he can weigh in with Gish, and B.
ask them both if it's too late for you to vaccinate against pneumonialcocyl.....thus saving you anymore rounds of this hopefully, or at least saving you from the worst strain.

also, what line of work are you in, there is usually some enviriomental issue that leads to this, are you out in weather or in a medical facility? Do you smoke? Drink enough fluid?
I'd want to take all preventive measures possible first, before cutting treatment short; especially as well as you've done thus far.  Chances of remaining clear go way up if you stick through the whole process.
hope that helps