Riba/peg absorption/tolerence

[Lady Lauri]

Hi all.
I have some thoughts on these drugs, RVR, UND, sides, etc, Any studies or input will be appreciated as I have had to reduce (again) to get thru last 3 weeks. I'd like to know if any studies or if anyone thinks this DOES make sense.

I have heard that some believe the harder it hits you, the more it's working, etc. Theory only I am sure. I DO feel that a persons tolerence to drugs /levels of DOES make much difference in this. Obvioulsy some absorb more than others.  A 128 lb. woman probably absorbs more thru out the body tham a 160lb woman or a 200lb man, etc. In SOC for type 2, we all do the same...180peg/800 Riba.  (rarely weight based) I could NOT handle that dose and was reduced week 6 (UND week 4, 3,5 log drop week 2). To me, the weight difference AND level of tolerence makes that difference.
Example: Any time a med say's 'take 2', I have to take one (other than antibiotics). I get a 'buzz' on 1/2 a Lortab, while some 'take 2'....I'd be knocked out! I truly feel that can apply here.

  At week 21 I feel as tho I am VERY 'poisoned' (which is norm. I know.) But my body/gut feel's like I have really absorbed, built up these drugs and to the point of 'afraid' to do the shot past 2 weeks, today. Labs going a bit wild, weird, etc. (Glucose was 53, than 37, (than 80 just 3 days later?) reds dropping more, etc.) Eyes buring terribly, feeling like 'chemicals' in them, nasal 'burning', chemical taste in my mouth 24/7...even when chewing gum, brush teeth! Pain....bad! My brain feel's 'swollen', cloudy, like I'm on a serious med, drugged state (not the norm. brain fog.)
  Those thoughts presented.....I feel absorption/build up plays a huge role in not only SVR but sides, tolerence, getting thru the full weeks, etc.Also in that, as the build up, wouldn't it be 'in' the system a few more weeks anyway after stopping-to still be 'fighting' off the dragon?  If so, than I also feel there is a time to really weigh out the last few weeks (with already 90% SVR chances) versus doing anymore damage.
(That really applies more to Geno 2's, with more % of SVR, weeks on tx, etc.)

Any thoughts here?

LL

[nygirl7]

I think anyone who has been on treatment understands exactly what you're saying.  I can tell you that post treatment I could tell the interferon cleared out VERY quickly - in just about two weeks all my 'tongue bumps' went completely away and that poison feeling left as well.  Unfortunately the riba does stay in our systems much longer - that was the drug that left me so lethargic and feeling crappy for so long.

They say it takes about a year for a person doing 48 weeks to feel normal.  I did 72 and have found that while I'm just at one year post now I can tell that I'm not at normal yet. How long with it take an extender, I don't know.

As soon as you get off the interferon you'll feel like you are off of it quickly. The medicine taste will be GONE it will be amazing.

Hang in there kiddo.  Absorption is a big important factor. We do have to make sure we are suffering our butts off it seems to me in order to know it's working - thats not true though but it sure did feel that way.

[zazza]

I am a little confused about how long ribavirin actually stays in your body. The pharmacist said "79 hours for one pill" reading straight out of Schering-Plough's information. But I have also read that it takes 4-6 months to completely clear the ribavirin from your body, so as to make sure one does not get pregnant within the first half year post tx.

[Lady Lauri]

Me too! Anyone know for sure? If, as they told you, '79 hrs. for one pill'.....is that 'one pill' that day or adding up the thousands put in us!? (you get my drift)

LL

[Lady Lauri]

Thanks girl. Good to know the Interf. is out fast, especially if it was for you in so many weeks!

.....I think anyone who has been on treatment understands exactly what you're saying....

I'm sure! Guess the main diff. is with 2b we 'can' chose to stop at different times with still decent %'s, which I am sure is why we ALL do that thinking!

I do wonder tho, as in tx the virus is killed off, perhaps than the drugs are doing 'other things' to us as no more virus to attack. Geezzz, it is just endless what we can ponder, wonder, speculate in this disease, treatment!!

Thanks for the 'hang in'.....hang being the appropriate   word,lol!

LL

[sfbaygirl]

As NY stated, most here KNOW what you are talking about. I went through hell many weeks.  I bought a soft toothbrush and some sensidine toothpaste as my mouth burned from the toothpaste.

Maybe i am overly cautious, but I wouldn't cut down the Riba. You only have a few more weeks. I would check that HGB to see if you are anemic and get some procrit if you do.  Hope you are doing well today!

Linda

[Bobby1952]

I guess it would be nice to think that if you have suffered greatly that the Medicine is working or working better. For the people suffering I hope this is true but some people have no sides and achieve SVR. I had a lot of discomfort and pain the first 3 months and then relatively very little the next 9 weeks (3 more to go....yeah). So I think that sometimes it is a shock to your system and then some people get kind of used to it like me. Others have it rough for the entire tx and some have relatively few sx. Like Jim says it is a crapshhot.    

Bobby

[sfbaygirl]

Yep, I call it Jumanji. Sometimes the sx are gone for awhile, sometimes they come back. That sure happened to me at the end when I had to stop suddenly. Hope both you and LL have SVR!

[zazza]

These are the exact numbers the pharmacist gave me. I asked for them because I had been throwing up a couple of times and was afraid I had lost the riba. The brand of riba I use is Rebetol.

Absorption starts after 0.05 hours. (= 3 minutes?)
Highest concentration in blood plasma (= maximum uptake) after 1.5 hours (mean value)
Distributed throughout body after 3 - 4 hours
Eliminated and secreted/excreted at 79 hours after intake

[dointime]

A friend of mine felt really lousy on tx and also had the burning eyes and nose thing.  He really was struggling to make it through the day.   He was prescribed an antihistamine which relieved his symptoms a lot.  He also started a sleeping pill which got him through the night.  Sorry I can't remember the name of the antihistamine but your doc should know.  

dointime.    

[Deb_c430]

zazza~~  That is good info thanks for sharing

[cruelworld]

your hemo level is your only indicator of riba absorbtion and it has limited meaning but
if your hemo is not falling below 10 i would try to stay at full dose. the riba concentration does slowly build in the first 5 months and yours is probably peaking.

pain levels have never been correlated with svr (that i know of) so i wouldnt count on that. my suggestion is to tolerate all that you can but dont push yourself too hard.  just remember, if you lose, you are facing another round and that thought alone will give you extra strength.

[kcmike]

The data sheet printed with microscopic type that came with my rebetol claimed that the drug has a 21 day half life.  I'm not qualified to say just exactly what that means, but I assumed that meant one half of the ribavirin would have decayed in 21 days and that the other half would take another 21.  I never asked anyone, I was afraid it might be longer.  

As for cutting back and quitting early etc. isn't it amazing what the mind can rationalize while on these drugs!  It's as if there is a mechanism that goes off in nearly everyone of us that at some point during tx you're ready to throw in the towel!  No wonder the doctors are numb to our complaints, I'm sure they've heard every excuse from us.  It really pi$$ed me off when they would just reply "it's okay, let's just take it one day at a time."  All I could think of in response was here if it's not so bad you take about 1200mg a day and call me back in a month!

Good luck with your dilemna and SVR to you.

kcmike

[susan400]

Many of the clinical trials for non-responders require a 3-6 mon 'clear-out' period from any previous treatment.  With that in mind, one would think that it would take at least that long for the Riba to be out of your system??  Also, if a woman is in her childbearing years, she is instructed to wait until 6 mon. post treatment to even attempt to get pregnant because of the Riba's long half-life.

Susan

[zazza]

According to "OneLook Dictionary Search":

half-life = "the time required for something to fall to half its initial value"

A half-life of 21 days would be that after 21 days half would be left. After another 21 days half of that (which is a quarter of what one started with) would be left. After another 21 days half of that (which is an eighth of what one started with) would be left. Am I correct?

[zazza]

After 84 days (4 x 21 days or 12 weeks) a sixteenth would be left.

After 168 days (8 x 21 days or 24 weeks) a twohundredfixtysixth would be left.

This seems reasonable. But how does this fit with the number I recieved: "79 hours". Is that when excretion starts then? I am positive she read it straight from Schering-Plough's own information to the pharmacies.

[zazza]

Willing just answered my question above about the discrepancy between 79 hours and 6 months in the thread:
http://www.medhelp.org/posts/show/425847the thread

This is my amateur understanding of what he wrote:

After 79 hours the ribavirin has cleared from the blood plasma but not from the red blood cells floating around in the plasma. The ribavirin in these red blood cells will stay there until the blood cell dies. It then gets released into the plasma. All the red blood cells will be exchanged after 6 months.

Willing:
"The effect of taking a new dose seems to peak in about 90 minutes "a time to Cmax of 1.33 ± 0.034 h after oral dose administration". Decrease of  plasma concentration varies across individuals, but as shown in Figure 2 of that paper is 0 or near 0 for most after 75 hours.

An important detail however, is that plasma levels don't tell the whole story. The rbv in red blood cells is *not* cleared and the rbv molecules stored there will go back into circulation when the rbc dies off."

[zazza]

Correct link to Willing's post:

http://www.medhelp.org/posts/show/425847

[merryBe]

kinda puts a whole new spin on the "name yer poison" idea don't it!!!!!!

I feel like I am up to my eyeballs in cayenne pepper.....in fact it feels like the level of toxic soup rises each night soon after the second Riba dose.....and leave me in a pool of tears off and on throughout the evening.  

f course, it has to do with how you sleep also.....haven't slept well since surgery and that makes you less able to tolerate the sides......short short endurance.

I would think you are so tiny that the concentration could be factored in....but like someone said, you don't want to have to do it ALL over again at some point down the road. that's the only thought that keeps me swallowing the stuff right now as I'm waiting to see if I'm UND by 6 months (and then will have another year to look forward to)..

maybe if you only have a couple of weeks you can look at it that way...at least you aren't saddled with 1a....and the LONG row to hoe.

what dose are you at now?

[susan400]

I was just adding up the months since I last took Ribavirin.  It's been 18 mon.  My treatment time on the Prove 3 last year was a short period of time and I was placed into the 'No Riba Group' and then, didn't get SVR.  Prior to being in Prove 3, I had been on an 8 mon stretch of being treatment free.  Anyhow, I was only on the Pegasys/Telaprevir for 5 weeks, so it's hardly worth even worrying about having any of it left in me since it's been 7 mon. since I came off of it.    I've had a few people suggest, 'what if you weren't on treatment for awhile - would your body clear it on it's own?'   The answer to that question is no.  I've had several stretches over the years of being off of treatment and I don't clear the virus on my own.  It's going to take either A.) a miraculous healing from God, or B.) Probably a 4 drug treatment.     Susan400

[Lady Lauri]

Hi all! Just getting back on here!
First....I wasn't 'whining' on explaining how 'I' feel, just comparing, noting to present the 'absortion in each varies' theory. I got really lucky on not getting some sides, and not so lucky on others, but OVERALL. extremely lucky in the 'Hep C' lotto of 2b.
As many say (Pigeonca? forgot *&%$) there is fewer studies on 2b's because of so fewer relapse's, cure rate, etc. to go by when deciding things in tx. Even stopping Riba in week 21, still at 90% SVR chances, so at this point it really is a 'luck of the draw'.

  Reading how long the Riba stay's in us has actually relieved my worries, as it'll be 'in' me the next few weeks. In this, I had to trust the Dr. and he's been open to ALL my questions, thoughts on dosing, etc. We've discussed every angle and he explains everything he does to my understanding. reassuring. (THO...still throwing a Riba or 2 in there! Shhhh! )

Sfbay.......I can't get 'rescue drugs' , in a trial. The reason I had to reduce, etc. It was reduce or get too low and be taken off totally, out of trial. He knew that and reduced to keep me 'up' , in the trial and on tx longer.

kcMike.....All I could think of in response was here if it's not so bad you take about 1200mg a day and call me back in a month!...........
  Just what I told a the biotch nurse in trial lab..."and how long have YOU been on these drugs to tell me 'how I SHOULD feel'?? (I have the sweetie, very cool NP, had to deal with that one when she was at a conference with Dr.)

cruel......your hemo level is your only indicator of riba absorbtion and it has limited meaning ............ the riba concentration does slowly build in the first 5 months and yours is probably peaking..................  
  Sounds right, in 5th mth. So 'hemo level, indicator, etc.'.......explain that? meaning show's in how low hgb get's?


Doin....He was prescribed an antihistamine ......
Thanks! Just e-mailed NP on that.


Better go to another post for other replies...getting long :}

LL

[Lady Lauri]

Zazza...... THANKS for all that info. Going to read thread now also. Totally understand how it absorbs, stays in us, and you explained how it 'lives' in the red cell's, etc. so well, had no clue on how that worked exactly. THANK YOU, well done! :}

you....An important detail however, is that plasma levels don't tell the whole story. The rbv in red blood cells is *not* cleared and the rbv molecules stored there will go back into circulation when the rbc dies off." ......
But :}, would you explain that again??
Thanks so much.

Susan.....  It's going to take either A.) a miraculous healing from God, or B.) Probably a 4 drug treatment. ,.............
You'll get BOTH soon :} And look forward to a breakfast with you when I'm OFF tx and can think straight,lol!


Merrybe....what dose are you at now? .....
90mg for last 3 shots. Believe me...I know how 'blessed' I am in this, Dr. said he'd never  tx me for 48 weeks (SOC as of now, triple therapy later maybe, but I am NOT going to need that :} HOPE your feeling better! Healing. Hope the cayenne pepper ease's up too!
Yup, toxic soup! You feel like your standing in a nuclear 'puddle', lol!

Bobby......(3 more to go....yeah).....
We'll be finishing up together :}
My 'entire tx' has been sheeet! Never got the lighter side of the sides really! NOT complaining, just how it went for me.
Sending you SVR vibes :}

Deb_c....hi ya' :}

Thanks all, I've gotten very absorbed in the absorption thoughts/possibilities of this :}

LL

[Wassup]

Wow, Riba peg/absorbtion, etc. I've just read my way down this whole page, and I'm feeling a bit overwhelmed.  I have a vague idea of what all this means, but only on the surface.  It almost seems like conversation one might hear in the Dr.s lounge @ a major hospital.  Perhaps this will all start to make more sense to me when and IF, I ever start tx. It makes me feel like I'll need at least an RN degree to understand what I'm about to embark upon. Right now I'm so confused that I can't even come up with an intelligent question.  Whew!! Wassup????