How much water should combo patients be drinking per day?

[mremeet]

Hi, I'm going to be starting combo treatment in less than two weeks and have a question. I've been researching and communicating with people who are in treatment, or who have already been through it (sometimes multiple times). I've heard over and over again that you should drink a LOT of water every day. Most combo vest have told me to drink at least a gallon a day, as it will really do a lot to lessen your sides. They even seem to say it ike this: "Getting ready for treatment? Better learn how to drink a lot of water REAL soon." And say it in a way like "Ohhhh you'll be sorry if you don't...you'll learn alright!" I also asked my RN about this and she confirmed that you should drink a lot of water and that it does significantly lessen sides. But, of course I've never been through this, so what do I know? Not much, so I'm hoping those with actual, extensive experience can tell me once and for all if this is a wive's tale, or it really is a good idea. Thanks in advance for any and all responses.

[FlGuy]

I hope that when you get it, it doesn't turn out to be snake oil.

[sfbaygirl]

My hemo has to SEE me each time I go in. Not sure why. So sometimes it is difficult to get an appt. Then of course, I sit and wait sometimes. I go to a lab a day or so before I see him to get tests.

It's not that I have SO much to do these days, but sometimes I have a hard time driving and getting outta here.

I'm still having some bone pain 5 days after the shot, but nothing like it was a few days ago.

I can't wait for my shark oil!

[FlGuy]

My hemo administed Neup/Lasta on the spot, as a result of the in-office CBC. On a couple of occasions they gave me Neup on my CBC day (monday) and said to come back the next day for another.  When I arrived at the ofc they'd get me into a treatment room - hit me with the neup and I was basically out of the ofc without having the time to sit down.  For me, I'd rather have the inconvienience of going in two days in a row than having the 'lasta.  We never discussed and rx for either Neup or 'lasta.  It was shoot and go, they handled the insurance end.
But, hemo's ofc location was convienint to both home and work.

[sfbaygirl]

I'm not sure why the hemo won't let me give myself shots (maybe b/c I don't pull back :0) I don't want to go in every other day or so for neupogen. Plus he says I will get the bone pain anyway. I may try it as this 'lasta is the pits.

I ordered my shark oil. Not usually into this kind of stuff, but I will do anything at this point to raise those WBC's.

Even if I can't get the dr. to agree, I am the one that calls him to let him know my ANC is low. Last time though, he got a call from the WBC police (lab) at night! It's not always easy to get in so I can stall going in myself. I am going to next time. Maybe I won't get to 200-300. I wonder if the WBC police will pick me up.

I would still like to see more than one study regarding Infection and low WBC in Hep C patients. No, I haven't ordered that study yet. It seems that there should be more than ONE, if this were true.

[sfbaygirl]

I think I would be much more worried about a swordfish :)

[FlGuy]

In addition to considering allowing your anc's to dip a little lower before neulasta, maybe have a talk with the doc about using Neupogen.  The sx's from neulasta, I think, are much worse than with neup. Plus, its 7 times more expensive (based on billing from my hemo). And although it seems to last longer than the nep I think the cost and sx's from the neulata do not make it a bargain, especially when you have all the other tx stuff going on. I found that I'd rather have more shots of neup than the sx's of neulasta.  And, although both were covered 100% by insurance I didn't think I liked the financial aspects of the 'lasta either.

[jmjm530]

180 mg Pegasys is standard dose for all weights. Why the 135? I still think you should trot the WBC studies to your doctor. Just because extra drugs don't hurt SVR, doesn't mean you should take them unless necessary.

[sfbaygirl]

I don't know why 135mg was what the drug co said I should take. After coming here and asking why I had to squirt out 45mg, I called the dr. He said take 180 if you can handle it. So I have been since day 1. I agree with you about taking extra drugs, I don't want to take the neulasta and will check my labs, but want to wait until the numbers are 200-300, if this is okay.

My hgb went up and has stayed up, perhaps my WBC will too. I can only hope and try that shark oil.

[Bill1954]

Thanks for your response, Debbe;

Yeah, I suppose they've got to ask regarding reinfection; I was going to ask as well, but didn't know how to delicately present the question. It's an ugly situation he's dealing with.

I would certainly think the test sensitivity was sufficient; although there are quantitative tests available to <5 IU, and I believe a qualtitative assay that reads to <2 IU, <50 IU is frequently used to establish research parameters, etc. At any rate, he somehow slipped through the cracks. As Jim mentioned above, some doctors believe that multiple Tx might "train" the immune response; my new doctor seems to subscribe to this theory himself. Hopefully Greg's T cells agree as well...

I

[jmjm530]

There was a study suggesting  certain per cent of EOT PCR positives were also TMA negative. 100% of his subgroup relapsed. Not sure how sensitive either of the tests used were.

I'm not saying that's the case with your husband, but it would definitely make sense to get a more sensitive test this time around -- something that goes down to 5 IU/ml. Quest labs has a couple of tests like that. One is "Heptimax" which is quantitative. The other is their HCV RNA Qualitative TMA, which is a qualitative. All the best with his new treatment.

-- Jim

[Better_Angels]

Greg's PCRs were sensitive "less than 50". He was undetectable all through both treatments. As I mentioned in my last post he was EVR at 18 days his first round and EVR again at 10 days this time around.

There wasn't much conjecture about anything, there was just plain shock. Especially on my part. The first question put to Greg was "could you have reinfected yourself"? I think Greg almost fell over. How? Toothbrush? Shaving? Clippers? No, actually we were wondering if you were infected "again" not reinfected? Ah, you bet. Ran right out and put a needle in my arm because the hell I just lived through wasn't hell enough. Still, they tested his genotype to be sure, but he was the same as the first time, so "relapse" it is.

He did have histological liver improvement. both treatments have taken him from a 3/4 to a "mostly 2 with a little 3". So all was not lost.

We are going to ask for a super or hyper sensitive PCR at 6 months. Since his viral load was so low when he relapsed (3,000) there is some speculation on my part that he had just relapsed. Shortly before his 12 month PCR he complained that he felt like he was "sick again". I ignored that because obviously he was SVR. I just kind of blew it off. I feel bad about that now because he never complains about anything. While I know VL can fluctuate dramatically from day to day, it's the only thing that makes sense to me.

I tease Greg and tell him he's "special". He always did do things his own way, never fit into any mold.

Bill, I don't know why your doc isn't a fan of Infergen. We're not either, but we aren't fans of any of these treatments. Just felt like our options were limited. It's tough, the sides were over the top and he isn't even remotely the same man he was. If he doesn't clear it this time, he's going to do maintenance and wait for something better drugs to hit the market.  

Thank you both for your kind hearted concern and empathy. I hope you and yours are as well as can be expected.

Take care,
Debbe

[jmjm530]

I have no idea what the protocol is to go off Neuesta. I just know my doc waits until ANC 200-300 to prescribe it. Hopefully your doctor will order frequent CBCs until things stabalize and both of you can come to a mutual understanding. Lots of different approaches regarding ANC in the Hep C medical community. As far as fooling around with the sharks, just don't bend over :)

-- Jim

[Snookmiester]

At week 30 something of tx, I developed a serious rash and allergic reaction all around my chest, armpits, and abdomen.. Dr thought it was allergic reaction, and we narrowed it down to wife switching laundry detergents on me. The rash was severe, severe enough to be checked daily for a week, and ordered to take presidone as a LAST resort. I was told that it was not good to take, but if rash did not go away, to use it as last resort.
Presidone shocks the immune system, and halts the natural response. It actually sort of turns it off. Well, common sense during tx is that we are trying to accelerate the response, stimulate and strengthen it to kill the virus that it was unable to do on its own. One nurse went as far as stating that the short "free" period of presidone tx, it might give the virus an opportunity to replicate, or rebound.
I never took it, but I know others on here have.

[sfbaygirl]

Wow, that makes me feel better! If I have to continue with Neulasta and bone pain, I am NOT going to suffer like I have in the past. I am feeling much better today after taking 2 pills over 2 days. I won't have to take it again for a at least 3 weeks now that the bone pain is gone. It makes such a difference in my QOL. My hemo says he will give me more, but that I should NOT take them much if possible. I didn't get more last time. I hate to think it could ruin my chances of SVR.

I figure since I am taking 180 instead of the 135 Interferon that was prescribed that should make up for what I lose....justify, justify. LOL I do feel quilty taking it, but the pain is too brutal.

[jmjm530]

Listen to your doctor.

When I was wasting away on treatment my doctor suggest anabolic steroids if I continued to lose weight and muscle.

Here's what a well-repected researher/hepatologist has to say about Prednisone and Hep C treatment:

Dr. Dieterich:

"...Oral Prednisone is the perfectly fine to use. I have treated people with it for most of their time on Peg and ribavirin and still gotten a cure!"

Complete Q&A here:

http://tinyurl.com/lqn4j
-------------------------
Like everything with the Hep C process, you have to weigh risks and rewards. If a steroid will help you stay on treatment, that's often preferable to not taking them and having either to cut down on treatment drugs, or worse, stop treating.

All the best,

-- Jim

[thatgirl67]

You said that Steroids reduce the effectivness of the Interferon? (16 weeks combo) My Rhumatoid doc gives me a rather hefty dose of Cortizone in the arm every 6 weeks, and now she put me on Pregnizone and an additional Sulfa drug. Do these reduce the interferon's effectivness that you know of?

[sfbaygirl]

That is my understanding. Steriods reduce the interferon. My Hemo/oncologist said 1 for 4 days of Dexosome? wouldn't do that much and there is the QOL issue. He told me I can take it, but take as little as possible. He said don't take 4, take 1 and see if that works. I did take one yesterday when I couldn't stand it. Hope I don't need more.

I would check with your GI/Hep dr. to be sure that those drugs you are taking are okay on tx.

[Bill1954]

Welcome back, Debbe;

And sorry to hear of your husbands relapse and subsequent re-treatment. I completed 56 weeks of Pegasys/ riba and relapsed within 30 days, so he's got my sympathy. I was wondering if you could elaborate on your husband's stats, and the story behind his late (one year?) relapse. As you're painfully aware, this is quite unusual; other members here would be interested as well.

Thanks,

Bill

[Better_Angels]

Hi bill:

I saw your post when you relapsed and my heart sank. I feel sick everytime I see those words.

Greg is geno 1B. He had baseline VL of 9,230,000, stage 3. Greg initially treated with Pegasys/Rib for 48 weeks. EVR just 18 days into treatment, undectable throughout treatment and post treatment through his 6 months PCR. At his 1 year post PCR, he had a VL of just 3,000. Retested immediately and it went up to 108,000. They started Greg on Infergen, daily doses of 15 mcg's which he did for the first 6 months. Then went to every other day for the remainder of his 48 weeks. This treatment was so hard on him physcially and mentally that he couldn't conceive of doing 1 additional day.

He thought he relasped again, so at 7 weeks he took a PCR and was surprised that it came back negative. Under the circumstances though he wasn't overy excited or optimistic by this, which is why he has decided to wait until 6 months to take another PCR.

For such a simple recounting you would think there isn't much to this story, but it has certainly consumed our lives for 3 1/2 years.

Let me just amplify my sorrow over your relapse. Really sorry.

Debbe

[Bill1954]

Hey Debbe,

Boy, this cr@p is unpredictable-- going by the book, Greg would-have-should-have done so much better as a super-responder; I sure would have bet on *durable* SVR for him.

What were his doctor

[Better_Angels]

Hi Chev:

Yep, it's me. I haven't been around much these days since Greg relapsed. That was a pretty painful time for us and the new treatment he took was grueling. We're 12 weeks post tx now, hard to believe it's been over a year since he started tx again. Greg has decided not to take another PCR until 6 months post tx. I don't blame him since he relapsed at 1 yr post tx last time. We thought he was cured like everyone else, still shocking even now.

I don't know why but I felt I had to stay away for a while. But it's good to be back and seeing so many of the "oldies" are doing so well. Very happy when I read you SVR'd.

Thanks for asking about Greg.

Debbe

[jmjm530]

Sorry about your husband's relapse. It seems to fly in the face of the statistics that say SVR is durable to around 98%-99. Someone recently asked a question over at "Janis and Friends" wondering if anyone relapsed after being non-detectible after six months. No one said they did. In your husband's case, a false negative at his six month post is always a possiblity, but then there's that 1-2%.

You mentioned that your husband had an EVR at day 18. Do you happen to know how sensitive the test was?  Was he tested after that or did they wait until week 48? Do you happen to know the sensitivity of his six-month post treatment VL test?

Hopefully your husband will stay negative this time even though he cut treatment short. Some speculate that the "training" the immune system gets the first time carries over into subsequent treatments.

All the best.

-- Jim

[Kalio1]

I would check it out with the pharmacist and the doctor I was told some types of steroids and all sulfa drugs were off limits on tx but I have't had to take them either so I did't look into it. It is hard to get a straight answer when you ask about drug combos you get different answers from differet docs it ca be frustrating. If you get a chance let us know what you find out. Hope things are good with you.

[Mister beagle bailey]

Water is important while on tx and it helps with the sxs.  Good luck on starting tx, you'll have much support here as you already know.  :)

Beagle