I agree with you Mike, this is all just a little too self indulgent for me.
Good luck to you Bali.
I don't understand why this thread was started - "When and how to take meds ?"
I mean it makes for scintillating reading and it takes up a lot of space but why do you bother asking these questions if you haven't decided to treat? Honestly, it's getting rather boring. Why don't you quit asking all these irrelevant questions and just WAIT?
Mike
I'm sorry but the ride ends here for me.
I'm sure you don't need my help but this is the last time I will try and help you. you are now on this roller coster without me.
You need to step back away from the internet and get it together.
good luck
thank you so much for all that good advice.
i will study all the links you posted.
Got a pm from CS applauding your posts as well.
When I asked Dr.J Park today what they test pre tx of course
IR was in the routine which I now know it should be since you can be IR
for no other reason that having HepC. My HepC-treaters should have put
this on my lab menu regardless of BMI ect.... it is to important , no excuse!
Just another wake up call . If it were not for you guys on the various forums
I would not know 75% of what I know today and it keeps going.
everyone is free to believe want they want.
I am just reporting what is happening during my journey.
Dr. James Park @ Mt Sinai told me today he did not believe bx was necassary
in my case and I could wait.
That is just a fact and I have to seriously consider this result.
Why the FibroScan is F1 today and F2-F3 in Aug. Germany I do not know for sure.
All I can tell you is what happend in between.
Believe me I have a lot of ???????? myself and don`t get me started on FibroSure
those were F2,F3,F4 in six months time.
Dr. James Park is also involved in liver transplants so I assume he knows what
he sees.
Honestly even though every MD I showed those F3,F4 Fibrosures (taken 1 week apart)
did not believe it because of my labs. Still when you get a piece of paper telling
you you have cirrhosis it does a number on you phsycologically.
Believe it or not since I got those FibroSure results my ALT literally went from 32
to 50 in two days (got labs!)
I now know I am nowhere near F3,F4 but maybe F2 worse case.
Todays result can not be a complete and utter error.
It consists of ten separate measurements. What , all ten are wrong ?
It also is physical not chemical like bloodmarkers which makes it more reliable.
My BMI is 23 (not obese) rather slim it is very easy to find my liver
I would do bx in a heartbeat if I knew it was 100%
Actually I would have had one if they would have excepted me in the
R7128 trial.
One more thing about Dr. Zhang. I asked him what he would do if he were me
and he replied if I had some time I could try SOC for 12wk to see if I respond.
So did my gastro same comment. One more thing about Berkson
he is the only one not favoring SOC and that
is mainly because of all the failures that he sees on a daily basis and the additional
serious health problems SOC can cause.I really pushed the issue believe me
and in one of our last meetings he said he propably has his view because he
hardly sees any successes because of who is walking thru his doors
By the way at NO time did Dr.Berkson ever
as a physician tell me not to do SOC , he simply said it was up to me.
Just want to get it straight that people like Berkson or Zhang are not curing Hep C
but they are helping people living with Hep C.
Unlike characters like Lloyd Wright and such. You propably find a lot of miracle
cures in cancer as well or those people who use religion and claim to have the power
of god to cure.
Actually Dr.Zhang and Dr. Jacobson know each other. Dr.J invited Dr Z to speak
at Cornell Medical once.
They even went to the same University , can you believe this ?
re IR/metformin/tapering etc: as always, take all advice posted with a grain of salt (maybe two!). IR/diabetes tests *are* routinely applied pre-tx, Drs may not have flagged them in your case simply because with bmi 23, good diet/exercise it's likely not a relevant factor. Before adding metformin/pioglitazone check the supporting studies. Two of those that found benefit
http://www.ncbi.nlm.nih.gov/pubmed/19919569
http://www.ncbi.nlm.nih.gov/pubmed/19845037
have questionable applicability. Note the very low SVR rates in the control arm for both, and lack of overall stat significance in the 2nd (and associated published comments)
From the Wang/Kao comment to the metformin study:
"The possible mechanisms of improving insulin resist-
ance therefore include metformin itself, concomitant weight loss during treatment, or reduction of HCV RNA level. To further address this interesting and important issue, the authors could provide data for analysis about viral load decline and the amount of weight loss at week 24 of therapy"
Before adding another drug, it's definitely worth evaluating whether it's needed/effective, which does not seem the case.
Riba predosing isn't firmly supported either, but there are scads of results showing (a) rbv effect is crucial (b) rbv plasma levels are variable initially then level out. Put those together and by *not* pre-dosing you're basically using ifn w/o rbv at the troughs before steady state. Benefits of gradual-reduction/tapering on the other hand remain speculative (not a reason to not do it).
Re the new FS, Dr. Park seems right on point, not because FS 6 vs 8 is significant but because either way you're not in tx-now range. Look again at that Afdahl FS/BX summary from HCV/DART09 - the bottom line is that fibrosis staging and its quantification are very very imprecise/variable. You can distinguish cirrhosis at a cutoff of kPa 12 from everything else reliably (as measured by sensivity/specificity 0.8) but beyond that trust in precision is unwarranted. From his slide 24
"Fibrosis staging is an inexact and artificial system with doubtful relevance to clinical practice and significant potential for pitfalls in clinical decision making"
With FS readings of 14/10, I'm quite a bit closer to the waterfall than you are but still think another year or so is no problem. And yes, agreed that adding a bx at this point would tell you nothing new.
BTW - it's great you have access to resources you do, but I can't help think this makes a poster presentation of what's wrong with the US health system...