When and how to take meds ?

[Bali05]

I will start SOC (180 Peg/1200 Riba) any day now.

What are the best times to take the meds ?

Any advice , I know Riba is best taken with a fat containing meal

does it need to be spread out exactly 12hrs apart ?

How does one start first day ?  Riba in the AM and than

PEG + Riba in the PM ?

[Bali05]

"Based on what I've seen from your posts regarding biopsy, doctors opinions and fibroscan results, the matter of when and how to take the meds holds no relevance for you in the near future"

If only that were true. I would want to give you a big hug.

Anyway I learned alot about taking Riba/peg on this post so thank you.
I will definatly looking into predosing atleast a couple weeks at which point
it does not matter to take the 2 doses exactly 12hrs apart and taking it
with a moderate amount of healthy fat helps absorption.

I do not know why but the my PA did not tell me this. he just said to take with
food.

The taking Tylenol part with peg I was told , but everyone can react a ittle different
so I guess you have to experience the effects first to know how to best
time injection.

That pretty much wraps it up .

[R Glass]

  When and how to take meds ?
After reading this thread, if there is any justice in this universe, 15 minutes should be taken from your life and added to mine.

[GSDgirl]

I think that your doctor should be very qualified to tell you "When and how " to take your meds

[Trinity4]

That's not true Bali.  Nothing written caused a total diversion from your original question and it does not come as a surprise that there is yet another twist and turn.

As I said, the balls in your court and you have been volleying this ball for a long long time even before these last test results so it shouldn't come as a surprise to you that people are rolling their eyes a bit.  People are different and there as those who run  every scenario by the group and probably need that interaction but the bottom line is we can't make the decision for you.  That is why you have that elaborate team of doctors so ponder the facts and use your own judgement.  Based on what I've seen from your posts regarding biopsy, doctors opinions and fibroscan results, the matter of when and how to take the meds holds no relevance for you in the near future.

Trinity

[Bali05]

I know what you mean.
this post got totally side tracked from its title but i noticed this
happens quite often in this forum

[Bali05]

if that`s the case I am sorry to , I value your opinion
maybe you will change your mind again some day
the ride for me does not end
what whould you do if right before you are about to start tx (actually already pedosing
Alinia) you are being told by a liver specialist you have a lot less damage than you originally thought and you are being told you can wait ?
Especially with new drugs on the horizon ?
Simply did not expect this result today and still need to digest it.
Just because I am not immediately jumping into SOC now like I thought
I was doing does not mean that all the useful advice I received so far is
a waist of time. Quite the contrary and I am better prepared for it whatever
may come

thanks copyman

[RCM829]

I agree with you Mike, this is all just a little too self indulgent for me.
Good luck to you Bali.

[mikesimon]

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

[copyman]

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

[Bali05]

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.

[Bali05]

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 ?

[willing]

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...

[nygirl7]

Me too obviously you know much more than us and we wish you all the best in the world, hope you know that but I've never ever ever heard of a doctor who thought that fibro was more accurate than biopsy.  Never.  Just so new members might realize this as well it measures best at both ends of the scale (no damage on one side cirrhosis on the other) but in the middle is not accurate nearly as reliably as bx.  (As you can tell by the varied numbers in Bali himself).

Good luck.

[Trinity4]

I say no more on the subject then.    

Good Luck with whatever path you choose.

[Bali05]

I discussed bx option with my treating PA.

He agreed that it is not 100% acurate either and ultimately would have to look

at labs as well to evaluate.

I showed Dr.James Park (Asst. Prof.Med.Div.Liver) my bloodwork as well.

He is also telling me why bx ? FibroScan is accurate at dx F4 and F0 and

F1 error margin  would mean I am possibly F2 , in any case time to wait.

Each reading  he took (10) had 100% success rate and a variance factor of 1.4

which is very small and means all 10 readings were close to F1.

I mentioned my previous FibroScan in Germany F2-F3 (90% success rate) before

we started so he really tried to get a good reading.

His comment to why the difference was his readings were 100% success rate

in Germany only 90%.

Anyway another doctor another evaluation.

Need to digest this , or more importantly destress and enjoy the weekend

[nygirl7]

So are we to all assume that you've decided not to do treatment now because your liver histology is suddenly and miraculously improving do to the ALA and Dr. Zhangs miracle herbs?

[nygirl7]

Bail you realize full well that fibro is not nearly exact whatsoever and in mid-stage of liver disease is often completely and totally all over the place.

This is why we do biopsy because it is the MOST honest way to tell liver damage extent for real - not just guessing at somewhere in the middle.

If you'd had a biopsy and showed me you went from stage 3 to 1 then I would be forced to believe it. But with the disease in hand your liver did not regress that much - it is not possible to happen so.  

Gosh just when I was going to post that i thought you had really made amazing progress in understanding of the disease.  Please note there are plenty of 'my fibro said this, then this' posts all over the internet.

you have learned better by now.

[Trinity4]

Just the history and ongoing dilemma Bali.  You ultimately have to make the decision.  

Isn't that your third fibroscan now?  All different?  

As they say, the balls in your court along with your doctors, not the members of this forum.  Your are the one that has to take the medications and we already know what the odds are with SOC and the new meds.

If I remember correctly, you haven't had a biopsy?  If it were me, that's the route I would go.  Seems like you have spent a lot of time, money and effort pursuing the best possible options in treating this disease and regardless of what you may think, biopsy is still the gold standard in determining the health of you liver.  That seems like the most logical thing to do given your conflicting reports and uncertainties.

Trinity

[Bali05]

unfortunately "sneaking suspicions" do not help anybody with Hep C

but tell me what is your suspicion , I don`t know myself yet what to do or not

to do. Just got back from the hospital.

[Trinity4]

I had a sneaking suspicion something like this may happen.

[Bali05]

I have met and discussed Hep C with Dr. Berkson in person about 7 times

average visit 1hr and spoke to many many of his patients

So far I did 2 visitis to Las Cruces NM in only 3 months totaling 5.5 weeks

being at his office 5 times/week , two times per day.

I think I can allow myself to have a good opinion about his protocol

and the people whos quality of  live he improves.

This is exactly why I did such an intense program.

If anybody is interested I am more than happy to share my experience

objectively and in detail.

---NEWS FLASH -- NEWS FLASH-- NEWS FLASH--NEWS FLASH--NEWS FLASH--

Just got back from Mt. Sinai Hospital NYC home of famed Dr. Dietrich

Dr. Ds schedule would have only allowed appointment mid April so I took

his collegue Dr. James Park, MD,CNSC (assit. Prof. of Med. Div. Liver)

to perform FibroScan

Result: 10 readings (100%accuracy)  5.9 kPa = F1

My last FibroScan in Aug09 (germany) was 8.0 kPa = F2-F3

Could it be that my approx. 50 ALA IVs reversed some liver damage or

maybe the strongly  targeted anti fibrotic herbal formulas of Dr. Zhang ?

Dr. Park felt very confident with the result and says I have time to wait for better

meds. The fact that my ALT spiked to 72 did not bother him very much since

these enzymes flactuate especially with Hep C and should be looked at

over time not just one reading.

I was planning on picking up Interferon on my way back from Mt. Sinai

but now I have to digest this new information.

What a freaking Rollercoaster !

[tashka]

Yes, all of this is correct. But he doesn't say anywhere that he will cure patients of hepatitis C-unlike Lloyd Wright, for example.

Not everybody will advance to cirrhosis, but some people do, even despite of multiple treatment attempts. And he gets these patients. I am sure people do their research before going and understand that alpha lipoic acid IVs can not eliminate hepatitis C virus. Most patients that go to Berkson failed treatment.

[Trinity4]

I have done some reading and didn't know if cure was one of those unspoken possibilty.  

I know I don't like his statement of:  "There are no remarkably effective treatments for chronic hepatitis C in general use. Interferon and antivirals have less than a 30% response rate and liver transplantation is uncertain and tentative."

I have never agreed with the 50% cure rate with antiviral therapy.  More like 40-45% and that's under the best of circumstances but stating under 30% is just wrong.
And the percentage who advance to cirrhosis is also low.  Looks like scare tactics to me but hey, he marketing a product right?

Trin

[nygirl7]

He was so very right and I would more than gladly take my upcomings from him now.  "

Yes but believe me I wish I had never listened about taking as MUCH riba as I did because the six point drop in the first ten days of HGB almost killed me. Thank God I listened to everyone and didn't give up but still I would NOT do that again - even though I was almost UND at week 4 I was not UND till after 12 before 24.  Got stuck at 400 VL and adding all the riba in the world wouldn't matter.

I think once your body DOES reach it's highest level serum concentration that it can the rest is a moot point.  Just so as nobody makes the same mistake as me.  

I found peanut butter and yogurt shakes helped me alot as did ice cream.........you have to know there is enough fat in a bowl of ice cream right ;)

And Trinity I agree 100% it is VERY VERY sad.  But we've done all we can and that is all we can do.  I wish grapefruit juice would do the trick boy that would be some easy course of treatment too right ;) I think some people do not understand that VL and LFTs aren't really much to the story at the end of the day. Sad very very sad.