TREATMENT SUCCESS...telprevir, fat, etc.

[merryBe]

http://formularyjournal.modernmedicine.com/formulary/Modern+Medicine+Now/Telaprevir-A-novel-protease-inhibitor-for-the-trea/ArticleStandard/Article/detail/730899

it's time folks started talking about how to succeed with this regime.

fat is important for both telprevir (or any other PI class drug) and ribavirin absorption.

other important considerations at the top of my list include:

low purines in the riba/PI meal to allow optimal absorption of the tx drugs.

keeping Insulin resistance low

switching to Infergen if you react allergically to the Pegasus (which means you are reacting to the medium and will absorb it too quickly) (nasty welts being the indicator there)

being proactive in treating anemia to avoid exaustion and oxygen deprivation

there are threads in here on all these subjects for those interested.

[crossroadsec]

low purines? gonna have to look that up. and insulin resistance low.  Thanks! Karen

[merryBe]

Brush border membrane vessels (BBMV) obtained from human intestines, in the presense of NA gradient (salt ions) inhibited riba absorption.
That is to say, in the presense of inosine and salt jujenal tissue BBMV lost it's ability to absorb ribavirin. Inosine, unlike the other purines studied was responsible for almost a complete inhibition (93% plus or minus 8%).

http://resources.metapress.com/pdf-preview.axd?code=t37258642421271g&size=largest

see the whole thread at

http://www.medhelp.org/posts/Hepatitis-C/Ribavirin-absorption-fats-and-PURINEs/show/1446708


"The only thing scarier than the truth, is fear of the truth."

mb

[crossroadsec]

Thanks. I'm a reading. I'd already cut oatmeal. But i'm only on 1000 mg daily of Riba. Maybe because I have only 1 kidney? I'm finishing week 4. I freakn wanna maximize the benefits now for sure. Lots of shakes. I'm eatn EVOO in everything w/ Telaprevir. I quit sugar years ago. Can't really stomach it much. Thanks so much MerryBe for helpin us newbies out. Gratitude DELUXE, Karen

[glucklich]

I never eat breakfast and often took both Tele and Riba without food at night. What sort of  meals work best???

Thanks for bringing this up.

[merryBe]

crossroads...yes with one kidney they will be watching your response carefully but I would try someone at regular dose, and then only lower it if the numbers change...you could ask for regular dose and more frequent checks...if they just run the kidney things and not the whole blood panel it should be cheap enough...if it were me, I'd ask for every week or 10 days, and the regular dose for your weight..
however with the PI on board as well..your chances are still very good. Yet the riba is still a huge part of the equation.  Those on higher doses than normal  of the riba (yes some do this) have docs who approve, but who monitor the kidneys closely.

glucklich-
I'd recommend either buttered toast, or bulgar, cracked wheat, with a little butter or olive oil for the fat...and a little milk and stevia (to keep sugar lower.) You could take any fatty vitamins n this meal which would also help...things like vitamin D, ALA other omegas or fish oils...take them when you take your riba.
in the evening have a little brown rice, with healthy oil, and some veggies.
keep protein to a minimum in the two riba meals..
The bulgar is lower in purines than oatmeal even, by half...so it's going to be a good bet.
a warm cereal or grain that absorbs slowly will keep blood sugar from spiking while delivering the drugs in a medium that will help them absorb.

If you rise at 5 am have your riba then, have a meal or snack with protein for lunch, or anytime 3 or more hours later.
In the evening if you can keep the riba meal low in protein...you could have a little cottage cheese, but avoid meats and fish. Also avoid B vitamins or things with brewers yeast in them.
so have an early meatless dinner...and then have a protein snack later, before bedtime.

You still need to get protein into your diet...just NOT when you take the riba.
Also, contrary to popular knowledge, you will control blood sugars better by having a late night snack, so the protein snack is a good thing. As a rule blood sugars are lower in folks who have a late snack....provided they don't overdo it.

mb

[joemc34606]

Is infergen an option with incevik, my doc said there were no studies on that, but I did infergen for a year and was undetectable the whole time than relapsed as so as I quit. Just wondered if the incevik would have kept it from coming back. I'm now on triple therapy. Thanks
Joe

[willbb]

I believe everyone here seems to be talking just fine about how to succeed with their treatment regimes, and by the results being posted lately ..it seems most are doing very well indeed.

There is a point where compliance to all the diet restrictions discussed above is basically impossible  for people to follow.
Do not become overly obsessed with this folks. Your doctor, if knowledgeable in the treatment of HCV will advise you on any dietary requirements.

Eat your Incivek and Riba with the recommended 20 grams of fat and make sure you always take them on time and without missing any doses.

If your HGB  has fallen  to anywhere near the point of needing the rescue drug Procrit.or even slightly above that in most cases you would be getting plenty of Riba absorption.

Try to eat sensibly stay as active as possible and drink plenty of water to help alleviate side effects.

These new meds are very powerful drugs in their own right  and success rates will not hinge on how much time and effort you put into  your purine intake.

Will

[streamline569]

Thanks Willbb.

Logic and sensibility......This stuff is getting me crazy. Two more days till my 4 week blood work. I am  just hoping to make it as stress less as I am capable of.

[willbb]

Yes..to all the newbies who seem to be doing just great....some things can certainly be very much over anylyzed  and this is one of those . Do not stress or fret over this in the least...listen to your docs and common sense will always prevail.

Will

[can-do-man]

Very good points Will, my doctor was more worried that i ate then what i ate, when on treatment one has to do what they can. And yes theres many of us here that are SVR.....

[willbb]

I agree cando..as you well know some folks can"t even look at food at different times in the treatment process ..let alone worry about studying their purine intake.
There is already enough stress too concern ourselves with ...
Hope all is well with you..
Will

[ribman]

i wish someone would have told me this sooner,half my fat comes from bacon,sausage and beef in the evening.

[crossroadsec]

Yeah. We gotta stay chill. I ate my homemade marinara w/ angel hair pasta n EVOO. That's my new trick. I just wander thru the store and see what sounds good. lol. There is a low sodium bacon. hmmm. add an avocado n some tomatoes. I'm in Oklahoma and they're putting on good this year.
I love ur attitudes on this forum. Man, nobody else in my life gets this. I've got support. But nobody knows. cept u. ;) May your inhibbies gobble up virus while you sleep hard. Karen

[desrt]

"If your HGB  has fallen  to anywhere near the point of needing the rescue drug Procrit.or even slightly above that in most cases you would be getting plenty of Riba absorption."

Really? I always thought it was a little more complicated than that.

http://aac.asm.org/cgi/content/abstract/47/1/124
"...recent preliminary pharmacological studies have suggested that the bioavailability of ribavirin displays great interindividual variability."

http://www.leberstiftung.ch/ribavirin.pdf
"Pharmacokinetic studies of ribavirin
in healthy individuals and in patients with [2], and
without [3] hepatitis C virus infection showed significant
interindividual variation and it is estimated that dosage
adjustment is required in ,26% of patients"

[merryBe]

it's much easier than you think..

I posted this stuff months ago and got the knee jerk reaction then too but it's cool if we don't panic.

basically, if you are insistant on protein for morning and evening, then switch your riba dose to lunch and bedtime.
That would work just as well.

the main thing is to not absorb far less of your meds which in proteins presense is what happens.

I wouldn't worry about oatmeal as much as the meats/fish.


the average male stomach empties in 3-4 hours, for female it is 4-5 hrs.

as long as the riba is passing through the small intestines at a differnt time than heavy proteins you will be fine...what follows hours later or before will not interfere.

For someone wishing to, breakfast with protein and dinner at 7:00 would mean have riba with lunch and right before bed...

so either way it can work for everybody.

as to the HB...look, if we were cancer patients they would put us on Epogen much sooner.
All I am suggesting is that Hepatitis patients become aware of their rights.
there is no reason for hemoglobin to go to 10 or even 8 as some doctors allow.
At those levels people not only cannot move, but they can damage thier brains.
We are by law supposed to be given Epogen by the same criteria as any other patient, not denied it because we have a "bad disease".
Not enough red cells to carry oxygen is life threatening, and patients should insist on their rights and non allow second class treatment.
The only people that come out ahead when helper drugs are denied are the drug companies.  Meanwhile patients lose their strength, their jobs, marriages, you name it.
Some of the side effects of treatment cannot be prevented but they certainly can be helped in most cases and in some cases even prevented.

where did you get the 20 grams of fat idea? That is almost an ounce of fat!! Rather extreme IMHO.  All you need is to trigger bile production and to aide the breakdown, and the stomach and liver will do that with less than 1/4 of a stick of butter.
Are you suggesting 20 grams for the day or per riba meal? Please clarify.

[merryBe]

Hi Joe, well you and half the folks that got duel therapy. that's just the hard knocks of dual therapy and also of our genetics and diet.

I'm of the mind that the concept of resistant strains forming immediately and surviving in small numbers would explain the relaspes and rebound both.

Research has shown that resistance forms quickly and that those mutants revert to wild type as soon as treatment ceases, and then begin to reproduce as before, once they revert to the original strain which happens quickly following dual tx the number climb quickly. Usually reinfection happens in the first 3, or first 6 months if it is going to.

It can also occur during TX.
Reasons include such things as genetic resistance to interferon (common in those of African decent), diet interfering with absorption as mentioned above (the populations with heavy protein consumtion also have the lowest cure rates although to date no researcher seems to have connected those dots) and fibrosis. The greater the fibrosis the lower the rate of SVR which makes me think that the virons are able to shield themselves in the livers grissle much like creatures in hard shells on a coral reef.  They then ride out the tx producing in small numbers...it only takes 20 virons to reinfect...virons so small that you can line up 30,000 of them shoulder to shoulder inside of this zero...........0...........

for this reason stage 3 and especially stage 4 patients should think twice before cutting treatment short...because the only difference between stage 4 and the rest is this fibrotic tissue....
to answer your NEXT and the most obvious question, the PCR doesn't detect what is residing in the liver, only what makes it to the blood stream...which is why treatment must be long and arduous, because more virons exist than what the blood holds...the blood hold on average a million virons in 5 drops of blood...the liver is packed even tighter.

The good news is the triple therapy cuts off another way the virus can mutate...cutting off several paths of mutation seem to offer the best chance at developing no mutations so our chances are much improved, but that does not mean we should let out guard down and not do all we can to improve our chance via those methods wherein we do possess some ability to control or aide the process.

mb

[merryBe]

desrt is correct, the blood cells are destoyed even at low dose or low rate of absorption.

our rebound and ability to reproduce is affected by our age and health, our bone size, our hormonal levels etc etc.  rule of thumb is that the older we are the slower our marrow will respond.
Someone with large bones will produce more marrow than someone with small bones, growth hormone level greatly influences the process as well....bottom line is that the drug can and does do a number even on those not absorbing it well...and the theory that if we just wait long enough the body will respond is bogus...

It's also not fair to set a mandatory level on when intervention begins. A small inactive woman might get by on a 10 or 11 HB...but a bulky hard working man would be passing out at work.  The guidelines are supposed to be interpreted by the doctor dependant on the patient and distress they are under.

yes, if you are 18 and in primo health, maybe your marrow will go into overdrive all on it's own, but pleanty of people lay gasping for aiir....like fish left on the shoreline gulping for something nowhere to be found.

There is no reason to let patients get to this point, other than that the drug cost 6,000
per month. That's 6 thousand dollars, US dollars...and that's reason enough to let as many suffer through it as will.
Unfortunately that is far too many since no clinic to my knowledge is informing patients of these facts, or their rights under current health guidlines.

mb

[nomorehepcliz]

re diet - my doc (nurse actually) says that it's good to take meds with food, but only because of sx, esp nausea if taken on an empty stomach.  When I asked about the 20 g fat, she told me not to worry, since I'm not taking Telaprevir.  Purines - not going to go there... can't worry about everything - this ache in my side is enough, along with insomnia

[merryBe]

ok, I think I know why they are recommending so much fat...it's to offset the damage of the protein but it will NOT work as well because the villi prefer the natural protein over the synthetic drug.

see my new post on the purine thread
http://www.medhelp.org/posts/Hepatitis-C/Ribavirin-absorption-fats-and-PURINEs/show/1446708

think of your villi as little kitty cats...have you ever seen a cat eat dry food with multiple flavors??  The cat will pick out and eat certain flavors and leave others...
well that's how the Bowel cells act...they will glomm onto natual purines and forget about your riba, and yes you can offset that somewhat by tons of fat to try and break it down extra extra well...but WHY? First off we eat something that halts absorption and ten we eat pounds of fat to try to compensate??  God, and I thought these folks cared about the science!!

It's nonsense to eat that much fat everyday...especially when you can get even better absorption simply by eliminating the competion and adding a little extra fat.
What they are suggesting is adding thousands of extra calories not to mention weight gain is frowned on with liver disease!!
Don't push the bowel along too quickly by adding large amounts of fiber either....the idea is to give the drug time to absob and the right environment to absorb in.
Hope that helps you.
mb

[merryBe]

this is incorrect. The subject here is how to make the both the drugs absorb.

While there is evidence to support eating less fat that the choking amounts one study recommended, the certainty that fat helps absorption is well documented.

I just pulled up the purine thread a little while ago...and you may want to peruse it.

even if you aren't taking the teleprevir you are taking the ribavirin, and the same things apply, less protein and more fat will help absorption.

Particularly doing only a dual therapy you should pay attention to this information.
This treatment is too difficult to want to repeat it.


I would much prefer to see any patient doing triple therapy now that it is available.
Do you mind sharing why you didn't?  Are you without insurance?
It saddens me because the success rate is so much lower, and I know that disappointment having failed treatment with dual therapy myself.
mb

[copyman]

I did my Telaprevir & riba with a glass of "whole" milk most of my TX. Maybe I got lucky, or maybe there is a sufficient amount of fat in glass of whole milk?

[willbb]

Of course the pharmacokinetics are more complicated than that,as they are with any medication we take The bio-availability  and exact absorption of any drug is a very complex process.
My point in my post above,was that as most of us here are not bio-chemists( I apologize if you are)and I for one do not have the needed knowledge ,the time and/or the wherewithal to study the exact absorption mechanism of the meds we take... my opinion was that I feel a "common sense" approach should be taken along with the recommendations of our treating doctors combined with the directions and dosing protocols from labeling (including diet ) from the drug companies.

The HGB. levels have seemed to be at least a general guide(not always)  to adequate Riba absorption  even made somewhat more complex with the addition of the new DAA"s and certainly as you stated the amount taken sometimes need to be adjusted(either up or down)

I f anyone else is interested in studying and reading all the posts in the last few hours on the exact science behind drug absorption ,far be it from me to ,to suggest  otherwise.

However ,with all the stress and stains of treatment and sometimes just being able to eat anything at all. and worrying about just taking the proper meds and at what times and with the recommended 20 gr of fat it seems toi me to add the studing of the science behing the whole thing ..may be a bit much for some......

Merrybe..........I apologize ,however I personally don"t have the time or the background in science to read your thesis type posts on molecular and pharmokenitic  topics.with that much interest..but thats just me ....obvoiosly others very well may....I wish you well.

Will

[ellen1960]

Well, it looks like Trinity got eRVR on triple therapy and did it without lowering her purine intake - how can this be?  Must have been all that sugar and unhealthy fat grams!

[nygirl7]

I didn't worry about purines because I didn't know what they were and have been SVR for what 5 or 6 years and I took my riba with smoothies and my regular meals and ice cream lots and lots of ice cream.

GO TRINNIE GO TRINNIE GO TRINNIEY WAHOOOOOOOOOOOOOOOOOO just the best news you unhealthy purine, sugar and fat eating lunatic ;)