Riba reduced

My doctor reduced my ribavarin from 1200mg/day (2x 600mg) down to 600mg/day (2x 300mg).  He did this in response to recent blood work which showed my WBC and plateletts were borderline lower limits.  I asked him if this could hurt my chances of SVR being I weigh ~247lbs should I remain UND for the remainder of Tx, and he said no being I was RVR and UND at wk 4 and I am type 2.  However, he said he would not reduce my Riba yet if I were type 1.  He also noted the reduction in daily Riba should eleviate some of the fatigue I am experiencing.

[tedinoregon]

PS, I am starting wk 8 of Tx this Friday (8th Pegasys shot).

[Myown]

What week are you in? He didn't want to use rescue drugs?

[Myown]

Well maybe get some other opinions, but I think this is risky to lower the drugs like this. Alot of doctors think that becasue you are geno 2 they don't have to be as concerned. Not to scare you but  I relapsed and was RVR and NEVER lowered my drugs at all. Talk to your doc about rescue drugs.

[Myown]

PS, I am geno 2b

[Myown]

Are you seeing a Hepatologist or GI doctor? You really need to see a doctor that is EXPERIENCED in treating hepatitus (hepatitis) if this doctor doesn't see many hep c patients.

[tedinoregon]

Well, getting other opinions is an issue being I travel so much (i.e. heading to Amsterdam this Saturday).  My doctor is a bright guy, U of Mich and is an infectious disease specialist who treats a large Hep C population in the Portland area.  He also noted the reduction was due to the fact I travel so much and he wants to avoid any issues while I'm away.  I think rescue drugs were not considered for this exact reason, too.

[tedinoregon]

I actually wasn't seeking advice from anyone as I trust my doctor and he is very expereinced.  The purpose of my post  was to hear from others who are type 2 and had Riba reduced during Tx and what the results were.

Lets face it, Tx is playing the odds anyway and I think with my busy schedule my doctor is weighing out the pros and cons (reduce Riba, travel, etc.).

[Myown]

He also noted the reduction was due to the fact I travel so much and he wants to avoid any issues while I'm away.  I think rescue drugs were not considered for this exact reason,
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But your doctor has to consider take into consideration that studies have shown that "weight based" dosing will give you a better shot at svr. Just because you are UND right now - that doesn't mean that the virus is no longer in your body - its "undetectable in your blood" but this virus also goes into lymph glands etc and this is why we need to keep the riba dose 'weight based' through out tx.

I was 137 lbs during tx and 5'6 and was on 1,000mg thru out - as I said RVR geno 2b - UND 4 weeks post and relapsed at around 8 weeks post. So though I was UND from week 4 - well actually week 2 if a less sensitive test was used - I still relapsed.

Your doctor has to let you have your best shot at clearing. Many people hear had to drag themselves onto airplanes for business trips - feeling sick as dogs BUT  they would NOT allow their doctor to lower their riba because they wanted to have their best shot.

Geno 2's have a very good chance of clearing. Please don't let my bad news discourage you,,,but PLEASE talk to your doctor.  I am very sensitive I guess about this....I feel geno 2's are taken too lightly by doctors and they don't give it there all - as they do with geno 1's cause they figure we are a shoe - in. WE ARE NOT A SHOE IN. A member on forum NYGirl went to a well know hep doc and he said geno 2's should go 48 weeks cause he has seen many relapsing lately.

Again NOT trying to scare you, but PLEASE talk to your doctor. Cutting your Riba in half IMO is crazy at this time. You are a big guy - you need the full dose.

Please don't take my post as a knock to your doctor. I am not putting him down - I just feel he is making a mistake in lowering and it bothers me that he said if you were as GENO 1 he would NOT lower Riba.... Again...geno 2's are taken for granted.

I wish you the best in whatever you decide.

[tedinoregon]

Look, I appreciate your concern but this is why I don't frequent the forums that often.  Lay people trying to give scientific data and medical advice is just not what I want or need.  If you read my profile you would see I have an MS in Biology and don't need anyone to relay their concerns over my treatment.  I have read up on HCV, have seen the stides on riba, wt, etc, and have asked my dr. more questions than you can imagine.  

He is a professional.  Lowering the Riba is not in response to being UND now, it is being proactive.  When I questioned him he said the last place you want blood related problems is overseas.  I don't just occassionally hop on a plane, I travel almost all week every week.  So there is more to consider in my situation than just taking more meds.  And I think the fact he is a Hep specialist and has seen hundreds of patients makes him more than qualified to make the appropiate medical decesions.

As I said, I was looking for real world examples of people w/ type 2 HCV who have had their Riba dosage lowered and what the result was, i.e SVR.  And please don't tell me about HCV and how it is still in me and so forth.  6 years of college (undergrad and masters) was enough ;)

[traveler65]

Hi: Also a geno 2B. Started with 1000 riba daily until week 15 when even with procrit weekly my hemo was down to 8.5. I ended up stopping the riba for one week, getting a blood transfusion and going back at 800 daily until week 24. I never missed a shot of peg. I was und, rvr, and still und 6 weeks post tx. My 6 months pcr will be in January. Had blood work done at 14 weeks post and ast / alt were very low. My weight was 175 lbs.
Hope you make it to SVR

[Myown]

Well Ted, all I can say is what I said and I wish you luck. I can understand your doctors concerns and blood related problems overseas, but if cutting your riba down from 1200 to 600 is being proactive then I guess he knows something that most other doctors don't know. And if you were a geno 1 he wasn't going to cut riba so he wouldn't be concerned about over seas blood related problems?

As I said good luck. Follow your heart - you know what its telling you. Thats why you stopped by?

[tedinoregon]

Well Myown, if I were geno 1 we wouldn't have even started Tx due to the length of Tx and the amount I travel.  Of course you wouldn't know that b/c I don't know you and you have no idea what my Dr. and I discussed 6 mos prior to me starting Tx.

I think you ar misconstruing a doctors "true" concern over my well-being with going against what "most other doctors" think.  Considering the odds are still better than 50% I will be SVR even with a decrease in Riba is still pretty good, comparatively speaking.  And remember, combo therapy wasn't always the course of Tx.  There are many case where Pegasys (interferon) worked as a single therapeutic agent.

And again, I stopped by to hear what others in a similar situation attained regarding SVR.  Not what studies or you think.

Good luck to you too.

[tedinoregon]

Thanks for the input.  That's what I wanted...to hear how it went for someone else who dosage was decreased.

[Myown]

That's what I wanted...to hear how it went for someone else who dosage was decreased.
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I think maybe you didn't read "traveler65's" post correctly - maybe you were busy admiring your profile, but anyway, Traveler didn't cut back until week 15 and then he went back on a dosage that was only 200 mg under his starting dosage.

And btw, 1200mg I don't believe is weight based for you(?) So you are now on even LESS than HALF.
You should come down off your high horse and when you come down maybe you can ask your doctor to show you a study that was conducted relating to the tx plan he has you on.
AND you said you "stopped by to hear what others in a similiar situation attained regarding SVR."
Not what studies or you think."

Well I can help you out with that one baby.......YOU are in this one alone - ALL BY YOURSELF- get it??
And so now you heard "what I think."

NO ONE on this forum has a story like yours- no one. Reducing the dose and THAT EARLY and not even weight based to start.

That was MH 101 - basics - the first thing we learn on forum from the members. "Don't let the doctor cut your Riba - yup Teddy first thing I learned.

You are a nasty person. I am very kind, sweety pie, ya know why? I hope I am getting you mad enough to do something about your tx BEFORE you wind up in the same boat as me. Believe me, you won't like it - none of us do.

[Libzo]

Just want you two to know - I love you both.  Two sides of a riba rage coin- I needed to hear some pot stirring.  This trip is tough for everyone.  Fear and the unknown, hedged bets, predictions and dissapointments are taxing.  My body is racked but my heart and mind are really dazed.  Still you fellow warriors and crawling wounded are my inspiration.  Riba and hmg cause one to learn about just what ones body really needs.  What Riba does with animia does to our pchye is frightening.  I think we get sick and tired of the constant struggle knowing still it's a damn long fight.  I have found new strength in the anger I feel.  Trying to learn how to use it otherwise it uses me.  We will prevail - we have to.

[CockSparrow]

Ted, when we had our little disagreement about giving medical advice and you are not that wrong btw, i posted some links on reducing riba and SVR chances, mostly from Shiffman.
Basically reducing Riba after UND has minimal impact on SVR so long as dosing isnt interupted.

At the risk of playing Dr again, Riba hits your RBC and its IFN that reduces your WBC and Platelettes.

All the Best
CS.

[spcecst2]

Ted I don't know about anyone else, but I think your one cool dude with your degree, all the traveling, taking your time to bother with us ("lay people") and most of all, exposing that a complete buffoon can get a college degree! I know you might not be able to comprehend this, but we would probably be better served if you took your own advice ("I don't frequent the forums") and didn't post! Happy Thanksgiving you self-centered little geek! You’ll be missed!

[CockSparrow]

Bit Harsh

[spcecst2]

Nope!

[Myown]

You weren't harsh at all,,, You're alright in my book,,,I like you!

[Myown]

Thanks Libzo, I love you too and I hope you feel better real soon. Hang in there.

[CockSparrow]

spcecst2 - Nope!
Made me laugh that

[zazza]

My ex - geno 3 - got information about the study for relapsers he is going to participate in today. It was interestingly enough divided into 3 arms:
a) 48 weeks for those who had relapsed after 24 weeks tx
b) 48 weeks for those who had relapsed after completing 12 but not 24 weeks of tx, and now were still detectable at week 4
c) 24 weeks for those who had relapsed after completing 12 but not 24 weeks of tx, and now were UND by week 4.

What do you think about that, Myown? Shows the importance of going the full 24 the first time in case you relapse.

They will measure viral load at baseline, 6 days, week 2, 4, 8, 12 and 24, EOT and post tx: 4, 12 and 24 weeks.

Blood tests that measure concentration of ribavirin in blood stream will be taken twice.

We hope for the best this time around!

[Myown]

Hi Zazza,
Thanks for posting this. Glad to see some studies going on for other geno's besides geno 1. I guess the studies are out there, but it seems I haven't seen too many and that can be discouraging being a geno 2 relapser. Geno 1's of course do have the most difficulty in more ways than one but I just wish that a little but more attention was given to non geno 1's and a bit of attention to relapsers - non geno 1. So this is good news to hear that they are conducting this study.

I definitely agree with a and b in the above, but I feel a bit nervous for the people who will be in "c."
The reason I say this is because of being a geno" 2" - RVR who DID go the entire 24 weeks and crossed every "T" and dotted every "I." But relapsed.So I am wondering if these people in "C" really need the 48 weeks to SVR. But then again - its all part of research I guess.

Now the crazy thing is I just read a study that Wyntre posted and it includes a geno 2 and the way it appears this person did 48 weeks FIRST ROUND - unless I am not reading it correctly. I just don't trust my brain and how it processes things anymore so best to read it yourself, but it does appear to look that way. AND now this geno 2 will be doing 72 weeks! That is the first time I have ever seen a geno 2 do 48 weeks first round and now do 72 weeks. I wish I had the opportunity to do 48 first round cause tx was very easy for me - but hindsight is 20 -20.

I think that sounds like a very good idea as far as measuring blood concentrations of ribaviron in the blood stream. Some members on forum have mentioned that maybe anemia is indicative of good absorption of riba and the "measuring of concentration" will now answer if that be the case. My hemo had gone down to 9.6 but I never really felt a thing. I made sure I always let my medical team know that I DIDN'T FEEL anemic and that I felt absolutley fine so that when I did feel any other symptoms or anything going on they would take into account that if I was a hypochondriac, I would have been fanning myself while being carried into the office by my husband because of my anemia. But that wasn't the case and I was fortunate cause I know some suffer terribly when the blood is that low and for some reason I didn't at all - just a bit breathy - no biggy though.

But anyhow if you get a chance check out Wyntre's thread on this page.
Good luck to your friend.
Take care.
Gotta run, my mother- in law was just taken to the hospital.

[merryBe]

notice how he draws us in with the oregon profile, and then your genotype, but then shoots you down for everything you say, reminds me of someone else just here for the holidays.....; ))))))))

SVR
tedi,
is less likely to be maintained was everyones point, especially at your weight,
hence suggestions of alternatives and cautionaries were appropriate.

If you were so heads above everyone due to your education, you'd know already INF alone had a very low cure rate and that cutting Riba in half might be wisdom at 106 lbs, but not at 247.

instead of thinking how stupid peoples responses are, maybe you need to consider these non-medical responders were looking out for your health, in the absence of a doctor's good advice?

your doctor cutting back your dose is saving the insurance company 900 bucks a month,
and not offering you procrit is saving them another 1000 a month
.
it is not necessary the best course of action as your odds of relaspe go up considerably and 4 wks is very early into treatment to be cutting back, based on what people with far more education than you have shared in here on many threads, and what you may also research and read up on pubmed privately if you are so inclined.

this is why people tried to reason with you.
So who is this doctor really looking out for, you, this guy giving you what you want at the risk of you not clearing permanently, or the people in here?
I'd say the people in here are the ones who just tried to do that,

Some of us in here are from Oregon, so please give us your docs name so we can be duly informed.

[CockSparrow]

The thing that gets me about Ted is that he states that his Doc is reducing his Riba for borderline Low WBC and Platelettes. Now if it were me i would be thinking that its the Peg that needs to be reduced. Nothing was mentioned about his RBC or Hbg.
Reducing IFN is something that i personally would be extremely reluctant to do, but dropping Riba is not as important for us G2s&3s.
There is evidence that reducing Riba (so long as IFN is not also reduced) isnt the SVR sabtotage that was once believed as the studies didnt differentiate between stopping Riba completely and reducing it. And dont forget that there was a study done in Austria that used 400mg Riba and its conclusions were that this was not a suboptimal dose for G2s&3s. Not sure I completely agree though.

Now this is just statistics and it could well be that on an individual level reducing Riba doesnt help with relapse.

The Riba dose for G2s and G3s is not as simple as it seems.
Some of us can get away with less others need more. How to tell the difference ??
CS

[CockSparrow]

I think Tedi got a little harsh with you. Putting down those of us that had Tx fail is not that cleaver in my view. Its not like he has to take any advice received from here but he might be wise if it at least made him think. If he relapses he might just regret it. He does remind me of another poster.

Me being a G3 true non responder, I can certainly empathize with you. I don’t think anyone can truly understand what its like to come down on the wrong side of the odds. We have both ended up in a <10% group for our Genos but for completely different reasons. Havnt got my head around RVR and relapse yet so I wont comment on it, but there isn’t a lot out on G2/3s and retreating is there.

I wouldn’t like to be in group C either. I hope that they cater for the reasons that caused the drop out this time though or it could well happen again.

Wish you well
CS

[CockSparrow]

Interesting study, Which Peg is the study going to use.

Wish your ex SVR
CS

[zazza]

The study is called RelapC. There will be 100 participants from Germany and Scandinavia. Geno 2's and 3's who have achieved UND during prior tx with pegylated interferon and ribavirin but relapsed post tx are eligible.

The drugs used will be Pegasys and Copegus. Copegus will be weight based at 1000 mg for  or = 75 kg.

At week 12 one has to have at least a 2 log drop (99% drop) to be allowed to continue in the study.

The blood tests mentioned earlier for measuring the concentration of ribavirin in the blood will be done not just twice but several times. There will also be urine tests on a couple of occasions (to test insuline level or what? anybody have any idea?).

CS, I didn't think drop out was thought to be the main reason for doing less than 24 weeks. I thought it was people who had chosen to do a shorter course, 12 or 16 weeks, which seems to have become increasingly popular lately among geno 2's and 3's.

Myown, it was exactly relapsers like you I was thinking of when I saw arm C. Just think of the possibility of going first 12 or 16 weeks, then 24, then having to do 48 and why not 72 next? My ex had strong thoughts about quitting after 16 weeks on his first tx. We are very happy now he stayed the full course, so that he is sure to get 48 weeks this second time.

Regarding Wyntre's link I agree with your interpretation of the text. It seems that the geno 2 patient has already completed and failed a 48 week tx. I would think that he/she is one of those who on that prior tx has not had weight based ribavirin though. I understand it to be that this geno 2 has now SVR'ed after 72 weeks of tx.

I hope this European study is just one of many to come that will look into geno 2 and 3 relapsers and/or non-responders.

Myown, being a relapser there should be great hope for you still.
CS, you know my heart is always with you, waiting for SVR for you.

Zazza

[zazza]

Copegus will be dosed at 1000 mg if you weigh less than 75 kg (165 lbs). If you weigh 75 kg or more, you will get 1200 mg.

[Myown]

merry said:notice how he draws us in with the oregon profile, and then your genotype, but then shoots you down for everything you say, reminds me of someone else just here for the holidays.....; ))))))))

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Hi Merry,
You know what's really funny though?? Re-read Teds opening. He never asked a question. He just told us his doctors tx plan for him. Talk about ego:)> He couldn't lower himself to ask lay -people anything about his tx, until he was annoyed by little ole me. But I do regret not knowing his backround before I answered him cause I would have lay prostrate in worship of him as I offered my opinion. From now on we all should check peoples profile to see their level of education and profession before we answer them. Oh that won't work - Ted's the only one who includes that in his profile. Teddy I thank you for helping me to grow in patience and I also thank you that I can see that my patience just couldn't make it through the entire thread. So I will have to ask God to help me with that some more. But before I ask God to please help me with my lack of patience with ego maniacs, I may as well throw in something that will help you - this is from a woman's perspective...when a man is as miserable as you, it usually means they have a teeny-weeny and are upset about that. (yes I conducted a survey amongst women who had miserable husbands and in fact their spouses all had tiny parts- the smaller -the more miserable they were) Now here's the thing Ted....women don't place weeny size on top of their list when searching for the right guy. They want a guy who is kind and compassionate, not only to them - but to all people. I hit the jack -pot with my husband cause he has what you don't have and is kind and compassionate to boot.

And so see merrybe - Jesus DOES have so much work to do INSIDE me, I fall soooooo short - but He loves me just the same (and I know you know that). I love you Merry, I hope you still like me even though I don't always turn the other cheek. Please put me in second place on your prayer list. You might even want to put me on the top now. LOL You're a doll!

[Myown]

think Tedi got a little harsh with you. Putting down those of us that had Tx fail is not that cleaver in my view. Its not like he has to take any advice received from here but he might be wise if it at least made him think. If he relapses he might just regret it. He does remind me of another poster.

Me being a G3 true non responder, I can certainly empathize with you. I don’t think anyone can truly understand what its like to come down on the wrong side of the odds. We have both ended up in a <10% group for our Genos but for completely different reasons. Havnt got my head around RVR and relapse yet so I wont comment on it, but there isn’t a lot out on G2/3s and retreating is there.
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Hi, I didn't think he was putting me down cause I failed tx - I felt he was just didn't want to hear from any "lay people." Of course I didn't realize that until he answered me and then I re-read his "question" which WASN'T a question and I realized what or who I was dealing with. Believe it or not, though he 'tried to cut me," my sincere concern over not wanting to see ANYONE relapse over -rode his rude remarks and his attempt to embarrass me. I don't embarass easily.

"Pride cometh before the fall." I hope he questions his doctor for his own sake. I wish him SVR even though I think he's a creep. Even creeps deserve SVR IMO.  We all have our personality flaws, I certainly do as you can see, but I thank God that I am not a mean person. And whats worse is a mean person who just can't change though he sees how mean he is. And its not the mouth, its the heart that needs changing. It's like the drunken husband who is so nice when he doesn't drink yet he beats the heck out of his wife or kid whe he drinks, acknowledges his 'error' apologizes - only to do it again and again. At least the drunk has an excuse and if he gives up the booze - he won't be mean anymore:)

I'm sorry to hear that you are a non responder. I didn't know that. Yeah we both fell into that <10%.
What does your doctor think as far as next step for you? Watching for a study maybe?

I wish you well too CS
MO

zazza,,,,Thanks so much for posting all this info. Please keep us posted with updates concerning your ex. Thanks!

[Proactive]

Hello za, hope you're hanging in there....How are they testing for riba serum levels? One those fancy tests? This sounds like a great study for your X to have gotten into...Is it blinded? Hope you will post results as soon as you get them, I'm especially interested in seeing the serum results...cool stuff
best of luck...;^)pro

[zazza]

Yeah, it does sound interesting, doesn't it? Sounds like a test we all would want. If all goes according to plans, "mr X" will be starting tx in January. He will be doing 48 weeks this time, since he relapsed after a full 24. I will keep you all posted.

I'm hanging in there, but am sick and tired of it all. I just finished 75% of tx, and have 25% left. Trying to decide whether that is little or not. Hmm, 17 shots does sound like quite a small number...

And... when I called the pharmacy to get my PegIntron shots for next month, my prescription had expired! After one month - it is supposed to last a year! Talk about riba rage... There is no limit to how much we have to fight to attain our medications apparently.

Hope you are alright too. Za

[fightit]

I am glad to hear you won't let idiots keep you from sharing anything that you find helpful for the rest of us. We have all searched the internet for everything we can find, but we have many people here on this site that have more resources at their disposal, and are willing to share with the rest of us.
I have learned more from this site than I have from my searching the web.
Almost everyone on this site want to help others that are struggling to beat this disease. Anyone who can't see that is blind.
I appreciate all the help and advice I have received. I am very grateful for all the people that take the time to share with us.

[Myown]

I am glad to hear you won't let idiots keep you from sharing anything that you find helpful for the rest of us.
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Thanks fightit for saying that. There are many others that know ALOT MORE than I do, but this guys post did really concern me in what I perceived to be "bad advice" from a doctor. And even if I was or am wrong, I wouldn't have been able to sleep that night if I didn't say something. I sort of surprised myself how patient I was with him. I almost felt like calling my husband over to look at my replies to this guy and how I was so "tolerant," but then when I added the "weeny" stuff, I figured my husband would say "yeah sure, patience." So instead of showing my husband the thread on the computer - I'll just print "part of it" out and show him." He'll be so proud of me.LOL

And yes I agree with you about the forum,,,I  have learned more from this site about hepc than anywhere else - including what my doctors have told me.

Learning from other members and reading articles and studies that are posted helps us all. It helps me to feel that I am still fighting this disease even though the meds aren't in the battle with me at this present time.

Thanks again. I hope all is well with you. Gotta run -take care.