I have a question or two...

[Xenigma]

When you start tx, do you take your first riba pill starting the morning of your first shot or do you begin the Riba a week before your first shot?  My nurse told me to start the riba the morning I plan on the first shoot.  Is this correct?  Seems to me that you should have the Riba build up in your system before injecting the first shot, but maybe I'm wrong. (I plan on starting this Thursday evening)  What time do you guys do your shots?  Right before bed or before/after dinner?
I'm not much of an eater in the morning, just like a cup of coffee and a granola bar or something.
I know I need to eat to take the Riba, what do you guys usually eat in the am?  Is a small bowl of oatmeal and juice OK?  The Pegasys site say's to eat low fat meals and that Riba can be taken on an empty stomache but I remember you saying to take the Riba with high fat content foods.
Thanks in advance for your help...
enigma

[Xenigma]

My new doc did do a bx in November, it was schiff who didn't want to do a bx. I was stage 1 grade1.
WSchiff told me I had minimal damage just by the exam and labs.

My reasons for tx'ing now are:
Post menopausal, and I will be 50 next year, <--those bring my chances of clearing down lower than it did 4 years ago or last year for that matter. He said if I want to tx now is the time.
Genotype 1b, feel like **** daily and it's just getting worse.  I have postive RA, sjogrens syndrome, raynauds, fibromyalgia, psoriasis, tiredness, brain fog, hot flashes, I can go on and on but I'll stop here. I can't even clean my house the way I used to anymore, I'm just too tired. Same goes for the pool.  I don't like feeling like this. I can't remember what it's like to feel good with no pain. It's been decades!
I may not feel good after tx but it's a chance i feel I need to take.
It's a crapshoot no doubt about it but I'll feel good knowing I did what I could.

You know, for the past 5 years, I've always heard the Docs say, a few years and we will have a better drug to treat HCV,  and we are still waiting.  I may not be strong enough in a few years. I may not be able to tolerate it now - I know it can makes matters worse too but it's a choice I've already made because truthfully, I can't go on feeling like this much longer.  Everything is a struggle.  No, I'm not depressed, I'm TIRED!  LOL
Always tired and hurting, I just hope I can continue to work my 28 hours a week.  I have a very physical job and am all over Broward County, different area's different days of the week.  I love my job though it keeps me physically fit and with different people each day.
Thanks for all your input...
enigma
I don't know how to make a link, but here is the site for Hep-C alert...
http://hep-c-alert.org/index.htm

It's really informative for all, not just us in South Florida.
Has some informative video's and especially one about having a liver biopsy which is good for
the 1st timers going for a bx.  It put my mind at ease a bit before mine.

[jmjm530]

The question I forgot to ask was why didn't your new doctor recommend a biospy? They are pretty much standard for genotype 1's and will give you invaluable information even if you are going to treat regardless of results. For example, you mention possibly treating 72 weeks in the event (I assume) of a slow viral response. Well, that makes sense if you have signficant liver damage (via biopsy) but might not make as much sense if you have little or no liver damage in which case you may want to stop at week 12 if not UND. Also, you may have to make decisions how agressively to treat depending on side effects. Again, knowning how much liver damage you have can be your guide. An alternative to liver biopsy is Fibroscan. As mentioned, Schiff has one in Miami. Lastly, when a doctor says he will do "blood work" every two weeks, they generally mean general bloodwork (CBCs, etc) and not viral load tests. At a minium you want a 4 week viral load test (PCR) in addition to the week 12 viral load test. Some doctors actually test viral load weekly until UND. That would be ideal.

-- Jim

-- Jim

[jmjm530]

At 129 pounds, 800 mg is weight based, but as stated, others have taken 1000mg at the same or similar rates. My guess is that Dr. Schiff had very good reasons for you to wait on treatment -- he's one of the best in the country -- including what he determined to be little liver damage and the promise of newer drugs on the horizon.

That said, I"m sure you've taken all this into consideration before starting treatment, but in case you haven't been following the news this past year, a new trial drug Teleprevir promises twice the cure rate in half the time (80 per cent cure rate in 24 weeks treatment). If everything goes as hoped, it should be on the market in a couple of years and by the end of this year we should have even more trial data.

I don't like to butt with my opinions after someone has made a decision to treat (as opposed to asking for advice) but you did open the door with your statement about Schiff. Therefore I will say that I would probably go with his advice. BTW he has a Fibroscan machine which is the next best thing to a liver biopsy. Not sure if he used it with you or not.

All the best,

-- JIm

[FlGuy]

Good luck as you begin later this week. The 800 mg of riba is about the right amount for weight-based at 129.  In one of your comments you mentioned that you would have labs every two weeks.  That's good for the doc to keep an eye on the effects of the meds.  But, the two week lab would be just before your third shot, not before your second.  Also good that doc will do a 4-week pcr.  But if you can convince him to do a 2 week pcr (again, just before shot 3) that might be a little more telling to see how your viral load is responding earlier in  tx.  It's good you have a doc you have confidence in.  By the way, can you post a link for that 'Hep-c Alert site'  Not sure if I'm familiar with that and there are lot of us here in S. Fla.

[Xenigma]

I think my 800mg of Riba is because of my heart condition and my weight. (But mainly my heart)
I'm hovering at 129.  I had my heart surgery a month ago (3rd time) to get that out of the way so I could begin tx.  I was a patient of Schiff/Jeffers/O'Brien but they wanted me to wait to tx.  Schiff said I had good genes and could wait for the newer drugs.  He didn't even want to do a bx he was so positive about the state of my liver (I've got to tell you, I have never met a more compasionate and caring Doc than Schiff)
Anyway, after 4 years I shopped around for a DR. who would be willing to treat me and I found an excellent one, closer to home and is on the medical board of Hep-C alert - along with O'Brien.(Great site for all you guys here in Broward/Dade and anyone to read through & watch the video's) I trust him, I will comply with SOC (Thought long and hard about starting Riba today & decided not to) and hope for the best.That's all I can do.  It may be a long journey, he talked about me douing 72 weeks depending on my vl's.  I plan on being UND at my 4 week PCR.  Gotta think positive!!!  
Thanks for your help guys...
enigma

[goldyn]

most of the time, only 2s get to take 800mg of riba and your a 1b i would ask you doc about that..I took my riba 3 in the morning with some fat and 3 around 5  pm with dinner...i did my shots around 5pm on fridays because i needed the full weekend to feel semi normal by monday for work.....Please talk to doc about upping the riba you want to get the best start you can have esp the first 12 weeks....

[FloridaMouse]

I also started my Riba the morning of my shot.  I was not a breakfast person either.  I tried taking the Riba on a full tummy and an empty tummy.  There was no difference in the amount of nausea for me.

Good luck on your tx journey.

Mouse
female, genotype 1a, Stage 3, Grad3
Finished tx 4/13/07
Hoping for SVR in Sept. 2007

[jmjm530]

800 mg/day is a low dose of ribavirin. It fits some weight-based guidelines if you weigh under 140 pound, but some doctors will start at 1000 mg, pretty much regardless of weight. All the best with your treatment.

-- Jim

[Xenigma]

I'm only taking 800mg of Riba per day (Split am & pm)  and prefilled pegasys 180mc's.
I'm tx naive geno 1b, last vl was just under 5 million.  (Can't remember the exact number off hand)
bx 1/1 -Nov 06.
My Dr. will be doing blood work every 2 weeks.  
From reading I gather I get blood drawn on Wednesday before my second shot.  
Thanks very much for your help and input, it's very much appreciated!

[jmjm530]

I first heard about pre-dosing ribavirin from someone here who posted their partner was in a trial that pre-dosed. Wish I knew what the trial was, or remembered the poster for that matter. It always seemed an intuitive approach to me, but I would bring your doctor on board before attempting it. Here is an older post on the subject with some more anecdotal information. Just remember, pre-dosing ribavirin is not SOC, so you will be in what appears to be uncharted waters. SOC (standard of care)  is to start ribavirin the morning of your first injection with food. The second dose of ribavirin is usually taken with your evening meal. Taking ribavirin with a meal containing adequate amounts of fat will help riba absorption and also be kinder on your stomach. Many of us take our Peg shot an hour or so before going to bed. That way you can sleep through some of the side effects. Here's the pre-dose riba thread:
http://www.medhelp.org/posts/show/95702

[FlGuy]

I like the way you think.  What the nurse told you is typical of the process in starting tx.  That is, by the end of your first shot day you will have taken you daily allotment of riba whether it's 800, 1000 or 1200.  Most split the riba in am and pm swallows. And then the race is on!
Personally, I think the pre-dosing for a week, or several days,  makes a lot of sense for the reason you mentioned.  It's what I did and I talked it over with the doc beforehand.