Is this the general approach for treatment?

[Amateur]

Hello!

I will see the nurse on Tuesday, telling me the viral load and explaining treatment.  I am genotype 1 and I was told that this are the minimun checks I should be having.  Do you agree?

“" Text blood done at the end of week 1, week 2 and week 4 (plus PCR   = Polymerase Chain Reaction). After that, unless anything worrying is happening a monthly test will do. Week 12 will also include a PCR to determine if treatment will continue. You need to have reached a 2 log drop from before treatment start (hence the importance of having the viral load figure) to continue.
If you have the 2 log drop but are detectable at week 12 another PCR should be done at 24 weeks. If at this stage you are still detectable, treatment should be stopped…."”

…. And as I am genotype 1, presumably I carry on another 6 months or more???  With only the monthly test -unless problems arising-??

Any other value that I would defenitely should be checked/monitored before and during treatment?.  I am spending hours in the internet with little clear results... it is all soooo complicated!!  or maybe a good link would do!  

Amateur

[charm27]

Maybe this can help. Im starting in a couple of weeks too. I have to go for CBC 2nd week after 1st shot, another CBC in 4 and six weeks. In addition they wlll do a PCR at 4 weeks 12 weeks and 24 weeks.

I dont think its that complicated I think our brain is stressed and it just seems complicated more than it is. I am geno 1 too.

The only advice I can give you since i need some myself is TRY 1 day at a time.

[FlGuy]

Not sure of the full exent of restrictions that you may have with testing (labs and pcrs).  But, early in tx it's important to understand the early viral response (pcr) and the effects of the meds on you (blood labs, complete blood counts or whatever they may be called there).
In a perfect situation you would have a pcr every two weeks until undetected and then every 6-8 weeks (or more) thereafter.  With the most important ones early that will help you identify, as close as possible, when you get to undetected.
As for the blood labs, I'd guess that the first should be after two full weeks on treatment (the first one just before shot 3).  And then every 2-3 (I prefer 2) thereafter until you have full stabilized on the meds and any rescue drugs that may be necessary.  Then maybe a little less frequent.  Also need to sprinkle in there thyroid tests, liver function tests.  There's a lot to it but you're getting the idea of it all.

[debnevada]

FLGuy has it right on.  That is a good schedule.

[charm27]

FL Guy has the schedule I want!  Unfortuntaley my doc ddisagrees on the PCR schedule. However Im going to insist on  getting at least 2 PCR's in the middle of what he already told me. I dont think
4, 12 and 24 is enough ?

[debnevada]

I got "outside" pcrs.

[charm27]

hmmm....I will probably do the same.

Now go and celebrate!!!

[jmjm530]

My schedule was weekly sensitive viral load tests until undetectible. If you can't get that, then push for every other week as FLGuy suggests. After that, monthly PCRs if possible, or if not, then at least every three months which would be week 12, 24, 36 and your end of treatment test which would be six days after your last injection, assuming you treated 48 weeks. The viral load tests should be a sensitive as possible, which means at least down to 50 IU/ml, but preferably down to 5 IU/ml, such as with Quest's Heptimax. The blood should be drawn for the viral load tests the day before your injection, so for example, the blood for the week 4 viral load test would be drawn the day before your fifth injection. It doesn't matter when the blood for the CBCs are drawn. Also, make sure to get a thyroid panel down periodically.

-- Jim

[jmjm530]

Viral breakthrough is pretty rare once you become UND by a sensitive viral load test. For that reason, the early-on testing (before UND) is most important to determine how well the drugs are working and to identify when you clear the virus. After UND, every 2-3 months should be fine, unless your enzymes elevate or there are other symptomatic changes that might warrant another PCR.

That said, early and frequent viral load testing is only helpful if your doctor knows what to do with the results such as going short course, extending, or tweaking doses -- although I suppose it's useful treatment for "next time" should things not work out. Ideally, you will have a doctor who him./herself will insist on frequent testing because it's part of THEIR treatment strategy.

-- Jim

[Amateur]

Hey, that was quick!!  Thanks, taking good note of it all.  

I believe the NHS in UK doesn't work as well as in Spain, France, Germany Italy....... many others.  Low budgets for everything so I think I will have to push and push if I am to follow your advice, FLGuy.  Are you all in the States??

I feel like if I have changed the course I was doing last year in psychology for a masters in hepatology.  I will get there....

Ciao !

Amateur

[FlGuy]

My tx doc was a little more liberal in the frequency of the pcr's.  Since I had relapsed and we agreed to be more aggressive the second time he was willing to go along.  He felt bad about the relapse. In addition LJ had given us some milestones to achieve to determine the eventual length.  Oversimplified, clear by 4, do 48. If not, at least 72. So, early viral load was important in the plan.

[charm27]

I will push for that. Thanks so for your always knowledgeable and very helpful info.

Wonder why Dr. Jeffers didnt suggest that?

However I will have as many PCR's as I have to ..I want to do this right.


Thanks Jim.

[jmjm530]

Some doctors may not feel that viral load testing before week 4 is all that important, since there is little data to support too many conclusions. My doctor does them as a matter of course because he likes to track viral load decline as precisely as possible until UND. Also, I was double-dosing Peg, as well as on high-dose ribavirin -- so the plan was to cut back as soon as I was UND. I therefore wouldn't freak if he only allowed testing every other week until UND, or even if he wont' test viral load until week 4. That said, knowing what I do now, if I had to treat again (theoretical discussion here) I'd want to test weekly and maybe even do a 24-hour and 48-hour PCR and compare those results to some studies that correlated those intervals with SVR. Let's face it, having a technician stick another needle or two into your arm and draw a little blood is the least of your worries on treatment.

-- Jim

[charm27]

hey they can stick me all they want, Your right that is the least of my concerns.

He only wants PCR at 4, 12 and 24. I will send an e-mail to my PA in a week to discuss this.

They prescribed me AMbien to sleep and I took it 3 days in a row..I get up and ou tof bed wide awake after one hour of taking this pill. SO thats what we are working on now. They claim they never heard of this before. They must think Im nuts but Im not.

There trying to give me something so I can sleep thru injection nite sx.
Thanks so for all the info-

[FlGuy]

Where you are planned for 4, 12, 24, 48 mine were 2, 6, 16, 28, 44.  So in reality I had only one more.  It was more the timing.  Could have been more if not undetected early though and would have been every two weeks.

[charm27]

You asked ..Where are you planned for 4, 12, 24 and 48?
LJ has me going for CBC 2, 4 and six weeks to start.
Then PCR 4, 12 and 24. I would like to do 2 weeks VL and 8 week VL in addition.

I will e-mail PA next week I dont want to act like a worrier before it all begins ya know?


Thanks Guy!.

[charm27]

Just when you think all have all the info down pat...there's always another question to ask.Just want to thank you all for being there for me. I have never worried or fretted about anything in my life so far except for now..so I just wanted to say thanks again.

Im ready for my journey thanks to every one of you.

[jmjm530]

Just make sure you get the 4-week test in. The reason FlGuy skipped week 4 is because he was UND at week 2. As to the Ambien, I do understand some docs prescribe sleep aids (as well as ADs) prior to treatment. Mine recommended ADs but I declined. And sleep was the least of my problems on treatment, in fact I can say it was my favorite time of the 'day' as slumber made it all go away. You might try explaining you would like to see how it goes without the Ambien. You can always go back on or try another sleep aid. Remember, this is your treatment, your body. Sometimes you have to gently remind your treatment team of those facts. My doc complied 100% with any reasonable request I made, after voicing his opinions. Sometimes I took his advice, sometimes not, but what I really liked was that he respected my choice.

One day I told him how I appreciated that fact. His response was, hey, it's your body we're treating, and you have a right to have final say. So simple, yet so many doctor's don't have a clue in this regard. Looking back, to me, this was  the single most important element in his treatment approach and made me feel I was somewhat empowered to make the distance successfully.

-- Jim

[charm27]

I told them I didint want to take a A/D. They advised me that I MUST sleep thru all the shot nights and must take something. SO we shall see I never took anything in my  life to sleep. But I never had to sleep thru sx of horrible drugs either. SO Im true they will find me something.

As far as A/D's I declined also.
I will have enough crappola in me I dont want anymore unless absolutely necessary.

Besides I lost the closest person in my life in 2000 and was put on A/D. It helped however it took me a year to figure out how to ween myself off PAXIL. But I did it!! What a long road it was.
However I dont want to do it again it was hell.

Thanks For Everything-
Feel Well..

[jmjm530]

Charm: They advised me that I MUST sleep thru all the shot nights and must take something.
--------------
This is peculiar because shot night --- for me and many others -- was no better or no worse than any other night. In fact, my worst days (after the shot) were usually day 3 or 4, not day 1.

Maybe others have different takes, but again, shot night was really no big deal. It was the DAYS I had the most trouble with, in fact if I could have slept the entire 54 weeks, I would of. Sometimes I think these nurses get something in their head based on maybe a couple of cases and just can't shake it. My guess is that less than half the folks here took sleep aids. Certainly not all.

-- Jim

[jmjm530]

Thinking back -- it was some time -- I did have some trouble sleeping for the first 2 weeks. That was because the ribavirin was building in my system but I hadn't gotten anemic yet. But once that initial period passed, no problems at all sleeping, in fact probably got more than 12 hours a night, including naps. Something tells me if I had started sleep aids early-on, I would needlessly have mucked up my system (not that it wasn't mucked up anyway) for over a year.

-- Jim

[jmjm530]

I probably should expand on the last post a little. Later on I did take Procrit to combat the severe anemia. But even as my hemoglobin went up, I still slept pretty well. So I think it was just my body getting used to the ribavirin that caused minor problems the first couple of weeks. That, and maybe the fact that the interferon soon enough sapped whatever xtra energy the ribavirin supplied.

[ladywhy]

I have not used it, but I understand that Ambien puts out an extended release form...think it's called Ambien CR.
Wish you the best!

You too, Amateur!

[orleans]

Hey, I'm to see my hepatologist in the morning and much to my chagrin
am going to move towards treatment. Do you think I should request a pre tx thyroid panel as a baseline? Valtoid said something about some auto immune panels???? One other thing--wasn't the svr rate of those without UND at 12 weeks something like 3%? thanks, jerry m

[jmjm530]

I think periodic thyroid panels are a good idea in any event, so sure, before treatment would be a good time to get one, especially if you haven't had one within the year. Not sure about the auto immune panels, maybe you should post to Valtod, or someone else will respond. The rates of those UND at week 12 is quite low for those that treat 48 weeks, but higher if they treat for 24 weeks, assuming they are UND by week 24. I think the 3% rate is for those who are still detectible at week 24, not 12. With such a low rate, treatment is generally stopped.

-- Jim