Wanted to post so just hit post. Guess you all should be able to read my mind huh?
Brain fog big time. I have a question about what someone said about 4 weeks clear, 48 weeks of tx. I cleared at 4 and have been clear at 12, and 24. My doc wants me to go 72 weeks as I had breakthrough after 24 the last time I treated (My peg dose was reduced secondary to low platelet count). I am ready to quit now and want to at 48. Since I cleared at 4 weeks "again" is it really neccessary to go 72?
What you are describing is SOC--standard of care treatment...As for coverage, it is the same here in the US dealing with private insurance companies, as well as the Candian nhs if not mistaken. Appears the number of pcr tests covered may vary, as well as helper type drug coverage or use and of course any extending past 48 weeks. But for the most part, everyone looks for a minimum 2 log drop by week 12 end, estentially determining if the meds are working on the individual or not. If I'm not mistaken, most "slow responders" do have the 2 log drop, just not clear of the virus at week 12 end.
Sorry, some corrections to my spelling:
"So I gather, from reading the forums and medical papers.... the problem is that the "NHS"".
... And about the extension to 72 weeks. They don't even menction it. Budget, I suppose. They save the money from the 'late responders' to treat the next lot. If you are not a 'rapid responder' (achieve the 2log drop) by month 3.. THAT'S IT!!! they don't give you a chance.
Arrggghh!! I am very angry about it. But I have my plan 'B'. I am going to have a private consultant folowing my treatment from the begining and if I am slow responder, he will take over and I will have to pay the hole thing. My insurance does not cover treatment. But I think it is much better than just stop without knowing whether at the end I would have achiever a SVR for ever and ever...
Thanks for the advice!
Amateur
So I gather, from reding the forums and medical papers.... the problem is that the NSH in the UK DO NOT PAY for the rest of treatment if after week 12 you have not drop at least the famous 2 log. And they woudn't even bodered with the pcr at week 4. This is just another example on how marvellously the social security works in this country.
By the way.. did you achieve the 2 log drop at week 12?
Amateur
If you are not UND at week 12 but ARE by week 24 then usually as a geno 1 you'd want to consider doing 72 weeks of treatment also. That's what I did. It is absolutely necessary to have that 4 week pcr - if not for it My ENTIRE course of treatment would have been drastically incorrect.
but really the 4, 12, 24 routine is very common and if the doc or insurance won't pay for anymore in the middle of all of that I wouldn't worry that much. Those are the big stepping stones and everything else is just to see if you've had a breakthrough - between 6 months and 12 months is a big stretch but...I don't think viral breathrough is really all that common, more likely it's relapse after the end of treatment so that's why they don't worry.
Best of luck to you on beating Hep C. Information is power, learn all you can.
This is the best site on the web. If you need information on UK treatment, there is a UK Hep site. It is under a new owner so it may not be the same as before.
The link is http://hepcukforum.org/phpBB2/index.php
Thank you for your stats and the best luck for you too!! I really hope you get it!! Please, update.
Amateur
I did PCR's at 4, 12, 24 and 44. Week 44 was considered my "end of treatment PCR" and it was done 4 weeks before my last shot for the simple reason that had I not still been UND they would just keep me on tx past the 48 weeks and get me to either Shands/University of Florida or the University of Miami for further evaluation.
I did CBC's every week for the first month and then it went to once monthly. My thyroid was checked every 3 months.
Good luck to you.
Mouse
Genotype 1a, Stage 3, Grade 3
Finished 48 wks of tx on 4/13/07
Waiting on SVR PCR results taken today!
Hoping for SVR baby!
getting late :) , meant "still detectible" (not UND) at week 12.
Line 5 should have read in part "but higher for those that treat for 72 weeks"
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
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
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!
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.
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
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
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..
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
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.
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!.
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.
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-
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