Just diagnosed, seeking treatment

[NewandConfused]

I just stumbled across this board and have spent hours reading but it just seems to add to the confusion.  My husband was diagnosed with Hep C, Type 3. We are in the process of trying to get treatment but now so many questions have come up that I am beginning to be completely overwhelmed.  Originally we were prescribed Pegasys and 800mg ribavirin daily but our copay was like 600.00 per month.  After discussing this with the nurse today I was told that he could probalbly take Peg-Intron instead.  I kind of feel as if I am settling for less?  Is one better than the other?  Does one have less side effects? Can anyone shed any light on any of this in laymens terms for me?  I am wondering if perhaps we are not seeing the right dr. or one who has enough information because so much of what seems to have been discussed on theboards has never been revealed to us? We were just kind f told to start treatment come back in two weeks for tests and Dr. followup and we would go from there.  I am sorry I am sounding like such an idiot but I am just beyone confused and overwhelmed.  Also... should I be paying this $600.00 co-pay or should I continue to search for a better price or a program that might help?  If you have any questions or need any info to be able to help, please ask away....  somehow I just need to get to the bottom of this and start the road to healing and recovery!  Thank You so much for any input!

[GSDgirl]

I also wish I had your copay!!  My first month was 1,968.00 and 40.00 after that.

Denise

[NewandConfused]

Wow - I certainly wish I had your copay!  We have a 20% prescription co-pay which is why the expense. I have been on the phone with Roche and they said they were going to send me an application along with some information - so I am hoping that might be a good thing.  I mean we will pay the $600.00 if we must but it will be awfully hard to get through it!  

[nersayner]

I can only speak for myself, and I am not as saavy as some of these posters so I may be missing something, but I am genotype 3 as well. I have Kaiser. I am about 160 lbs. My dosage is 2 - 200mg Ribavirin daily and the Pegasys once a week. My co-pay is $15.00 ($371.20 value) for the Riba and $15.00 copay($1190.50 value) for the Pegasys (month supply of both) so $600 co-pay sounds sort of high to me but what do I know...

[HARRYBEADS]

Hello and tell your husband he is not a loan

   From what you wrote at the start, it sounds like your in good hands, 800 mg of ribavarin was weight based for me at 180 lbs and a bit. Needles,my wife did mine...wink,wink.
  Get the Nurses email address and phone number and ask away, my nurse was great and would ask the Doctor for me. She would also sent perscriptions to the blood clinics and pharmacy in a flash. All my test results were emailed to me and we felt like someone cared.
  Type 3 has high rate of clearance.

          SAY HELLO TO HUBBY, WHATS HIS NAME, TEACH HIM TO TYPE

HARRY

[Bill1954]

Regarding the bioavailability of ribavirin:

From Schering-Plough’s PEG-Intron prescribing info:

http://www.spfiles.com/pipeg-intron.pdf

“Effect of food on absorption of ribavirin:

Both AUC and C-MAX increased by seventy percent when Rebetol Capsules were administered with a high fat meal: (841 kcal, 53.8 g fat, 31.6 g protein, and 57.4 g carbohydrate) in a single-dose pharmacokinetic study.”

However, keep in mind that while this might be intuitively correct, there aren’t any studies (to my knowledge) that suggest following these dietary guidelines will have a positive effect on SVR rates. Someone else might provide further info.

In case this link was missed above, go to:
http://tinyurl.com/6qd788

for a comprehensive list of HCV acronyms used in this forum.

Bill

[GSDgirl]

Hi and welcome, you have found this wonderful place way before I did, I was almost finished with tx.  Much of what was told to you in this thread I did notknow.  I was (I hope) 2B, weighed 115 lbs & did the 800 of riba.  I did not know about the fat binding but I must have been eatind the right things because I was UND 12 weeks into TX and UND 4 weeks after TX and hope to be SVR in Sept.

My gastro was an a$$.  I wish I would have thought to switch but I didn't until the end.  I was looking at my labs which I finally got some copies of.  GET COPIES OF YOUR HUBBY'S.  Not shouting but it is pretty important.I can see why I felt so bad as some of my labs were really out of wack and nothing was ever done and I didn't know any better.

Denise

[comeagain]

here you go, sx means side effects
tx means treatment
UND means no detectebel virus in the bloodstream (undetectabel)
SVR means sustained virus respones = cured

[scratchinghead]

yes, I second or third the biopsy need.

And remember, you are paying the doctor to help you  get well, not vice versa.

(he may be a little confused because the money comes from the insurance company that you send a premium to. yeeha! get on the gravy train! )

[R Glass]

I am still at work so I just had time to scan over the posts. Someone may have already mentioned this and I missed it. I didn’t see if he had a Liver Biopsy done? HCV is a slow progressing virus. If he has minor liver damage you have plenty of time to figure out what to do. Don’t procrastinate but don’t rush in either.   R. Glass

[ksk3926]

I hope I am not repeating anyone else here. My best advice to you would be to:
GET A NEW DOCTOR!! Any doctor who says that there is nothing that can be done for the sides is either not very nice or not very knowledgeable.
You have to be able to count on and relate to your doctor, especially through this treatment. I went doctor shopping through many-a-specialist before I found the RIGHT doctor for me. I treated 1a for 48 weeks with pegasys and weight based riba and have been svr for almost two years now. I treated through USC which is a teaching hospital and they were up on all the latest news and I highly recommend a teaching hospital over the others. If I had treated with any of the other three specialists I had met, I would not have made it through treatment at all. My point is, don't worry so much about the medications, the priority is finding an excellent doctor, one who takes the time to explain all of this to you. Now take a deep breath and relax. Then go and interview docs!
Kathy

[comeagain]

I must say this if you get less peg it would be cheaper because pegasys is always 180 no matter what you weight is.

Your doc seem a little to keen on prescribing small doses ( just a feeling i got).
I wanna say as copyman just did, try to find a hepatologist get a second opinion.

ca

[comeagain]

Hi welcome to you and to your hubbe of course.

I´m a geno 3 about the same weight as your husband.
Did one tx 2006 on 800mg riba 100 peginterferon 24weeks, thats the old protocol was und week 12 and eot. relapsed though.

Now most treating docs at least i hope so, are using a new protocol with weight based riba and interferon  and also if not UND at 4 weeks extending treament to 36 or 48 weeks.
`
I´m on my sec tx now done 21 of 48weeks, now taking pegasys which is 180  and riba 1200
Sx this time about 10times less but the reason for that can be that my liver had a beneficial rest,althoughi didn´t obtained SVR I was UND for guite some time.

God bless you and your husband.

ca

[copyman]

It comes down to which pharm rep is taking care of the doctor and staff better. that is what peg they will recommend. I have read that pegasys is better but they probably are very close in treatment outcomes. i do not think peg intron is any cheaper so not sure why the nurse told you that. i would find a liver specialist (hepatologist) to treat your husband. best of luck

[Proactive]

good to hear you are approaching the finish line-- again....but you have to stop moving it further out!!! (lol)
My disposition? Just had my 3 month post blood draw done yesterday, should have the results soon enough--fingers (and toes) crossed...;*) pro

[Proactive]

"The researchers found that SVR rates were significantly higher with the higher dose of rib-avirin at 24 weeks (42% vs 29%) and 48 weeks (52% vs 41%).39Other data have shown that weight-based dosing of ribavirin at 10.6mg/kg/day provides optimal response rates and supports a ribavirindose of 800 to 1400 mg based on body weight.40Further researchhas confirmed the importance of ribavirin concentrations in predict-ing response to HCV therapy.41Researchers assessed the populationpharmacokinetics of ribavirin in patients with chronic hepatitis Ctreated with interferon α-2b and ribavirin in 4 clinical efficacy stud-ies and found that higher serum concentration of ribavirin at week4 was associated with a higher response to treatment at week 24"
http://64.233.167.104/search?q=cache:kqbfR9UTgS0J:www.nipcweb.com/Schering_Hepatitis_C_CE.pdf+weight+based+minimum+ribavirin+dosing+easl&hl=en&ct=clnk&cd=11&gl=us

[Bill1954]

Thanks for asking, Pro. I’m currently in week 90/96; coming around the bend, as they say. What is your current disposition?

[Bill1954]

It’s important to understand that the controlling factor for dosage is established by the Standard Of Care (SOC), which describes the *minimum* level of care a health care provider must provide a patient. This can be increased at the prescribing doctor’s discretion if he feels that it’s in the patients best interest.

Different manufacturers have established different standards; remember that the drug ribavirin is a generic label; brand names are Copegus (Roche) and Rebatol (Schering-Plough).

As per Roche, the current SOC dosage recommendation for genotype 3 patients, regardless of weight is 800 mg/day ribavirin (non-weight based).
http://www.rocheusa.com/products/copegus/pi.pdf  (Table 5).

As per Schering-Plough, the SOC recommendation for Genotype 3 Patients is 1200 mg/day ribavirin, regardless of genotype, but weight based for 89 kg.
http://www.spfiles.com/pipeg-intron.pdf  (Table 6).

Many cutting-edge hepatologists and gastroenterologists follow recent research which suggests weight-based ribavirin dosing results in higher rates of Sustained Viral Response (SVR), and disregard the mfgr recommendations in favor of research. You can discuss this facet of treatment with your doctor.

Additionally, GT-3 patients tend to have higher rates of fatty liver (steatohepatitis); this can be determined by biopsy, if the proper stains have been ordered in advance. Another item to discuss with the doctor.

Watch this thread carefully; there are a number of patients here that are infected with GT-3, and are sure to chime in with there input.

Genotype 3 has been conveniently grouped together with GT-2 in terms of treatment protocol and response rate; recent studies have shown a higher relapse rate.

All the best,

Bill

[nygirl7]

i weighed 120 when I started and I asked them to "up" my ribavirin (he was only going to give me 800).  the doc went with it without any problem - so I doubt you would have much problem either.

I unfortunately really played with my own treatment in my stupid ignorance of just how potent the little pills were. Somedays I'd double the ribavirin. Yup not so smart.  For a really skinny person it was WAY too much. So I ended up having an extremely drastic problem with the anemia that most people never would get because they wouldn't be that crazy to begin with.  That was a hard thing but as long as your doctor will prescribe a rescue med it is ok - Procrit works very well. Make sure that this doctor WILL prescribe the so called rescue meds if you need them.

I developed an autoimmune disease thanks to the peg around week 24 and it destroyed my thyroid. first I was hyper then I was hypo (where I stay to this day). That was fixed by taking one synthroid pill every day as a hormone replacement.

so I was in the not so lucky group pretty much all of the time. However - I pretty much really did it to myself.  Can't blame the meds or anybody except me thinking I would help myself get "cured". Well it did work so who knows........

There are many different sides and mostly sides come and go during different times in treatment. It seems if you just get rid of one another bounces up. But eventually your body does get sort of used to the poison and it all irons itself out. My biggest complaint was I developed tongue ulcers from the peg and a terrible skin rash as well that I'll probably have forever (the tongue bumps went away as soon as I stopped the peg).

I'm only telling you all of this because inevitably - as hard a road as it was...I was diagnosed stage 3 and did NOT have time to wait and see if easier things might come down the road.

That is why we all sort of stress having a biopsy - it really is important to know where you stand on things.

Oh yes here is a good news thing about treatment - you can eat ALL the ice cream you want LOL it helps those tongue bumps feel so much better AND it's great for taking the riba with especially if you get a kind that has nuts in it for the good old fat oils!  :)

See - there is light at the end of the tunnel after all!

deb

[Proactive]

Unfortunately, there is no exact formula for weight dosing the ribavirin/copeg. For some reason a minimum in the range of 10.5 mg/kg/day rings a bell with me to be considered weight based. But I'd guess at 195#'s he should be taking a minimum of 1200mg/day, probably closer to 1400. (But I'm just a construction worker...:*))

Bill--almost 10,000 riba ---shesh makes my 4000 seem like childs play lol) -----you ought to be getting close to wrapping your journey up? 5 weeks?

pro

[FlGuy]

Usual riba dose is 13 - 15 mg per kg of weight per day.  A 185 pound person gets abot 1200 mg per day. A 155 pound person gets about 1000, and so on.

[NewandConfused]

Thank you once again!  Good to know that he needs to take it with something containing high fat, that is the first I have heard if that!  Now if I could only figure out what a weight based amount of Riba would be. Then I can contact the dr. and know that I am asking for the right dose and that he is in fact giving me the right dose.  Can I ask you how severe your side effects actually were?  Some people sound like they sail right through it and others sound as if they suffer so.  I wish there was a way of knowing before it happens.  I am a little upset because when I asked the dr. if there was anyway of handling the side effects he said no - but from all the reading it sounds like there are lots of ways to get through it!

[nygirl7]

ribavirin is copegus - same stuff different name.  i believe all the capsules at 200mg so that would be 2 capsules = 400 mg x2 - 800 a day.

Please - tell your husband to try and take them with breakfast and dinner 12 hours apart. Make SURE he takes them with something that has a high fat content...the riba binds TO the fat, if you don't get enough you will just urinate it out.

[FlGuy]

You need to round that number up.  Can you find 4 more?

[Bill1954]

Good math. If that figure isn’t disturbing enough, by July 11th, I’ll have ingested 9,996 riba since February ’05 when this all began. Very strange behavior, eh? I’d expect a lab rat would have more sense :o).