Ribavarin Reduction

[Wireboltman]

I started treatment 10/24/03. (Peg Inton Alpha 2b once a week and 1000mg Ribavarin a day. My viral load was 33,000,000 (Type 2) at that time.)My blood counts have continued to drop steadily and six weeks ago, they reduced my Ribavarin to 800mg. I weigh 175lbs. I have very extreme shortness of breath. I still do some exercise, shovel snow, take care of myself, etc, but it almost drops me to my knees at times. (Did I mention I'm stubborn?)  (I did an enormous amount of reading about this for the last year before I started this treatment. I was diagnosed in 1977 with non A, non B. My neutrophil count is 1.1 as of this past Wednesday. Neupogen is being considered. I'm wondering if my doctor has already compromised my treatment by reducing my Ribavarin. My reading tells me he has. We've had some "discussion" about this. I would appreciate any thoughts or experiences as to a possible compromise of the treatment due to a reduction of Ribavarin.
I insisted on a viral load test at the 12 week mark last week and am awaiting the results.

Thanks,
Dave

[odessit]

The standard of treatment for genotype 2&3 is 800mg of Ribavirin, so you're just fine. My Neutrophils count went down to 0.9 by week 12 and then rebounded to 1.7.

[DebbieDo]

I am 1b and i take 1200 a day of Riba.....is this normal  .......tomorrow i will do shot #4

[hph5477]

The amt of Riba is weight-based; and I believe the smallest dosage is 800mg.  I could be wrong but I think most people take 1000-1200mg.

[layla]

The recommended dosagee depends on if your on pegintron or pegasys and your genotyping. Pegasys is 1000 for up to 165 lbs then it's 1200 for a genotype 1's. I believe for 2's it's 800 and 1000. I am not sure of pegasys but I thing it 800 for 2's and 3's then 1000 for 1's and 4's. LL

[jonihs]

that' exactly what
itron was told by GIPA when i was first prescribed pegasys. Peg Intron is weight based and pegasys is decided by soething ele(not sure what)   Joni

[Honey15637]

my pegasys was decided by weight.  I'm starting the big TX tomorrow LOL  Everyone wish me luck!  I need it!

[Martee]

I do the recommended dosage of Pegasys, but my riba is weight based. I have been on 600mg per day for the past seven months. I weigh ll6 and 5'2.

[Indiana]

OK...Lets talk about this Riba stuff a little. This is the second post I've seen about a reduction in the Riba.
Here's what I've read. The latest studies show that the higher the Riba the better the outcome....By a bunch. The problem comes in when the dose is SO high that the patients Red counts and related stuff drop SO low that they HAVE to reduce it below the weight based standards. Thats WHY they have the weight-based standards. Those standards are set by all the studies that showed how much MOST folks can take and still keep their counts within tolerable levels. So...no matter the Peg used....the outcome is better if the Riba is weight based.
The other thing I've read in the studies is that the Peg is most important early on in the tx and the Riba is more important later on. Makes sense. The Peg is more about stimulating the immune system to kill the virus and the Riba is more about keeping it from replicating and slowing it down so the t-cells can get it. As long as it stays in the bloodstream the t-cells can get it. Riba also helps stimulate the immune system but not like the Peg. Some docs are now even starting tx without any Riba at all and then bring it in later on to keep the Peg dose REAL high in the beginning without nailing the patients blood counts so badly all at once.
The last thing I've seen is that 800mg of Riba IS still in the "theraputic" range for that med. It is the lower level of the normal weigh based tx, but it "should" still be pretty darned effective.....Unless you're like 600 lbs. THEN you need a treadmill...not more meds.
Reduction of the Riba is usually to help the Red counts and related stuff. Peg reductions are used for problems with the white counts and stuff related to them. Procrit is used to help the red counts. Neupogen is for the white counts. Not all docs and insurance companies will use them as they are pretty darned expensive and its just easie for THEM if they just reduce the doses. That doesn't do much for Dragon Killing though.
Soooo...If you can get him to give you some Procrit and up your Riba dose back to "Normal" weight-based standards(1200 for you) for the last 1/2 of your tx time then you would be much better off. Unless there's something I'm missing in your counts.
In the end...the bottom line is that it all depends on your blood counts. I know that we ALL want all the meds we can get to kill the Dragon. But it does no good to kill the Dragon if the patient dies with it. There just HAS to be a balance struck somewheres. That balance point is different for all of us.
Thats just my (never to be humble) opinion.
DRAGON SLAYER   (FORMER Type 1b)

[jonihs]

Thanks for the info. I thought it was the other way aruond. Stick arond if you can. We need you!   Joni

[CARUU]

Thanks for the info.  I'm on 800 riba daily and 1/2 dose of pegasys because of a drop in white blood count.  I don't have a copy because I was notified by phone, but was told that my wbc is 1.2 and needs to be 1.7.  I'm also dealing with a new dx of hypertyroid that is making me crazy.  I don't know what is what now. My question for you:  I'm 14/24, 2a, vl 140,000. Undetectable at 12 weeks.  Will this drop to 1/2 dose of pegasys hurt my chances of staying undetectable?  When I mentioned Nuepogen to the nurse she said the normal procedure is to reduce the dose and that they do it all of the time.  I now have no TSH and that's making me produce way too much thyroid hormone.  I'm afraid he's going to reduce my tx even more!  Thanks, caruu

[MajNeni]

Hey, Honey,
You'll be fine.  The anticipation of tx is worse than the fact.  Good luck with your first shot.  It might seem like it will go on forever, but believe me, it won't.  I just did shot #48 this Friday.  
Type 1's and 4's on Pegasys usually take 1000 or 1200 mg of ribavirin; 2's and 3's do 800 mg.
I had some significant reductions in ribavirin in the second 24 weeks; we have to wait and see if my tx was compromised.  I was on Procrit and Neupogen most of the time, and for the last several months, 2 shots/wk of each.  I was undetectable at 12 and 24 weeks (Heptimax).  I'll let you guys know how the end of tx PCR, coming up this week, turns out.  Hope to get a 3-month post tx test after that... so now we wait.
Congratulations to Tom Will, WillieB, and Adavisirl, my classmates.  May we all stay clear together.  
Come on Timbo, Jill!
Maj Neni

[louisep]

Im f, 5ft 5, 3a and on 8/24.
I was around 125lbs before I started TX, and within 4 weeks had gone down to 101lbs.  I was originally on 800mg Riba & .5 og pegintron, but due to the weight loss & practically crawling around, I first had my Riba reduced to 600mg and then again to 400mg, low plarelets, hemoglobin etc. My pegintron was also reduced to .45, which I have been on for the last 2 weeks.  
My energy has returned since & I feel practically back to normal, but at what cost to my TX?
I'm to see my Hep C nurse today, & I'm hoping they will up my meds again.  Will keep you posted.
Louise

[Wireboltman]

Thanks Odessit and all others who've contributed their thoughts.
I've not been able to find a differentiation in Ribavarin amounts based upon type 1,2, or 3. 165lbs and over are supposed to take 1200mg and less than 165lbs are to take 1000mg.It gives me encouragement that I may be wrong. I would rather be wrong. The Mayo Clinic and Medscape sites are where I've gotten a lot of info in the last year. Given there's only a 60-70% chance of being cured (and staying cured) and that by reducing the treatment by any significant amount, you further reduce your chances about another 67%, I'm trying to stay on top of the situation. Like my dad used to say, "You trust your mother, but you cut the cards." I'm pushing 52 yrs old. After 60, they don't like to do this treatment because of the side effects. Now's the time for me.
Has anybody here experienced extreme shortness of breath? Apparently, only about 14% do. Just putting my work boots on is quite a task at times.
I feel very fortunate to have stumbled across this forum. It's much more encouraging to be able to talk to people going through the same thing with this kind of format versus talking to those that aren't and a monthly visit to the doctor for a sterile conversation with him.
Thanks again and good luck to all of us--
Dave

[ellissg]

I start Peg-Intron Friday. Nowhere in my kit does it say if I should start the Rebetol, 400 mg AM and PM, total 800mg, before I do the shot Friday night, or wait until Saturday. Also, can I take the shot after eating?? When is the "best" time?
Thanks....

[ringading]

morning, congrats on starting...that much closer to finishing!!
i take my pills in the morning when i wake up..(2= 800mg) hopefully, by 9am and then i take my evening pills around 8pm  the shot most people seem to do at bedtime, i have found that between 4pm and 5pm works better for me.  hope this helps!

[terriri]

Hi Majneni, wow, it seems only a short time ago you were nervous about beginning TX again. Now it is all over and you handled it all pretty well considering your blood counts chose to fight you along the way. You may or may not need to keep patience with yourself a little while longer to give your body a chance to bounce back after all the meds. At first, I had a little bit of a problem with the patience part, my body & mind had conflicting ideas on how they would spend each post TX day. For me life became rosy around 5 ½ months post.  Lately I am so often amazed at how subtly but markedly hep c had affected my life over the years (didn’t even know I had it). I am so much more motivated and positive about life in general since I have become a dragon slayer. I think you too will be amazed at the increase of energy. Now I know this part is going to sound incredibly sappy but love & the appreciation of others has taken on a whole new meaning. Before TX the feeling of laziness was transforming into uselessness. I wish you my very best on your likely post tx undetectable status. Also, my heartfelt condolences on the loss of your beloved dog, I hope you are coping as well as can be expected. I am sending you a big hug -------- and a little tear-----------because I care.
T        

[ellissg]

Thanks!! Do you eat dinner after the shot and take your pills with food?

[ringading]

oh honey, i am certainly not the BEST example of taking my meds properly...no...i just take them....usually without food.Big mistake!!, i am finding out now...a nice latte though!!..BUT i will say, i think it is definately recommened that you take them WITH food , as they are better absorbed, i have seen written, when taken with food!...fatty things i think ....even have, toast and butter etc.... and then at night, maybe a peice of toast with peanut butter...(good protien)..but do as is recommended and take with food i would think sweetie...i am trying now to force myself to have a peice of taost and butter/p-butter w them....
well off to the vampire session for blood work...later
kimmy

[ringading]

opps....no i don't eat before my shot, but i sure do after it...don't know if that is nervous eating or what....but i sure like to eat within an hour max of the shot, i CRAVE food then !!
cheers

[hph5477]

FYI - I take my shot on Fri early AM; about 30 min after I take my pills.  Then I go fix something for breakfast; usually just a bowl of cereal.  Don't think it really matters if you eat when you do the shot or not.....haven't heard/read of anything on this but everyone does suggest taking the pills with food.

[louisep]

Just got back from my visit with my Hep nurse.
There is NO WAY, they are going to put my meds back up!  I'm totally DISTRESSED! They want me to stay on 400mg Riba a day & .45 Pegintron for the rest of TX (8/24). They will absolutely NOT perscribe Procrit or Neuropen but have given me a milkshake kinda drink for people at risk of malnutrition.  I have always had a huge appetite & for the last 2 weeks have been having fryups every breakfast & not stopped eating in hope to gain weight (I've only gained 4lbs)!, in hope that they will up my dose again.  It seems Procrit & Neuropen aren't standard procedure in the UK? Have any other Brits found this?  Iam also monitored for B12 as I'm bordering Pernicious Anemia.  Hemoglobin is up to 10.3 from 9.7.  I trust my Nurse, completely, she is truely wonderful, but I'm concerned as I know that Britain are way behind on TX.  Am I ever gonna get SVR on these small doses??
A very worried,
Louise

[ellissg]

Since RIBA is weight based, I'm surprised at the dosage you started on. I weigh 245lbs, and will start with 800mg, and my Doctor says that's high and He'll monitor me closely for the first 4 weeks.

I'd stick with the lower dosage which sounds right for your weight. You'll do fine!!!

[ringading]

OKAY OKAY...MY MISTAKE!!...i have now my box of ribavirine in front of me....i was wrong...... the pills are 200mg each..i take 2 in the morn...which would be 400mg and then 2 in pm another 400mg......which means my TOTAL daily intake is 800mg....don't know why i thought it was 800mg each time....oh..sorry for the confusion ellisg...then my injection.....PEGETRON...is .5   so louis we are in a similar weight group as indy explained the weight dosage ..i was at 134lbs ...now down to 128....at week 10, guess i'm not going to lose these extra pounds i had fun putting on BEFORE treatment...oh cheesecake cheesecake!!
hang in there lou!!
kimmy

[soulangel71]

When I saw my doctor he made it really clear to me that i was to eat with my pills. I am not sure why - i guess to help it absorb quicker maybe? Since i have such a hard time eating in the morning - and usually dont eat until dinner time - this was very hard for me to start to do. I have found that eating 2 bites from a slice of plain bread when i take my pills seems to work. And of course i take my coffee at the same time! My ribavarin is prescribed based on weight - but i am still only on 800 a day - I am geno type 1, 5'3" and 114lbs
I take my shot at dinner time on Saturday night -let that settle for a bit then take my pills. Sunday is my day off from school, work and excercise classes - which seems like a very good idea now that i know how tired i am come Sunday morning!

I have been lucky so far and have had no nausea or sickness or extreme tiredness yet! keeping my fingers crossed that it stays that way!

Diana

[ellissg]

Thanks to all. Are Y'All able to go to work without too much difficulty? I guess I'll know come next Monday!
Someone said over 60 don't treat. I'm 64 and my Doctor never hesitated.

[Showboat]

Hi.  Re: "shortness of breath" is a common every day thing for me.  I had hoped it would go away, but it HAS gotten better.  Early into my peg/copeg tx, I was anemic and so my Riba was lowered from 1200 to 800.  I was never prescribed Procrit, etc.  I remember trying to go to the zoo in my first tx month, my husband and I were walking (lots of hills and upgrades at this zoo) and I had to sit down every 10 steps.  It surprised me how winded I was, gasping for breath like I ran 1 mile straight away. It really frightened me, but I did not want to have to stop tx. It is MUCH better now, but still a nuisance.  I have to smile though, 'cause everytime my hubby calls me from work, and I walk over 3 feet to answer the phone, my hubby always asks "why are you huffing and puffing?" (his question is getting "old",lol )  As many on this site have stated, it seems pretty common, BUT tell your G.I. about any sx you have. Good luck to you.
Berlynn:  I responded to you on "Friday Night" post.

[Wireboltman]

Thanks for responding. It's comforting to know there are others with this same sometimes very severe breathing problem. It actually makes it a little easier to deal with.

[raheem]

During tx, I experienced shortness of breath, low RBC,HCT and HGB and finally after 4 months of suffering my doc put me on procrit-it makes all the difference in the world.  I could continue my 1000mg/daily intake of ribavirin and go about doing activities of daily living without a thought.  A ribavirin reduction does reduce your chances of becoming an SVR.  In my opinion, you'd be well served to push the doctor to give you procrit...at least you'll feel better and maybe get back on 1000mg a day of the riba.

[JamesL]

http://www.rocheusa.com/products/copegus/pi.pdf

[Indiana]

It is recommended that for the BEST results that we take the Riba WITH food. What that does is to actually slow the digestion of the Riba and keeps the levels higher for longer. The Riba is passed through our systems pretty fast otherwise. That is also why we split the dose in two and take it twice a day. Its all about trying to maintain as "constant" a level as possible. They want to avoid the "spikes" in the med levels. That is also why the PEG nariety of interferons work MUCH better than the old 3x/week shots did. The Peg keeps it in our systems at theraputic levels for a longer period of time. We can't give The Dragon any time to recover so keeping a good "level" is the best way to accomplish that.
Caruu   You are dealing with more than just the virus. You are also having Thyroid problems that "appear" to be brought on by the meds. This is not good. These types of problems MUST be considered for you too. I am no expert on Thyroid things but I would think a reduction of Peg would probably be called for. These sides "can" be both permanent and possibly dangerous.
Now that I've said that...Let me add a few things. You are Female(?)...PLUS type 2(the easiest to clear)...PLUS low load, PLUS they are keeping your Riba high....PLUS they also didn't really reduce your Peg all that much did they?... PLUS you are in the last 1/2 of your tx. PLUS you were clear at 12 weeks.....PLUS you seem like a nice person(ok, I just threw THAT in there). The point is that you have an awfully lot of "pluses" going for you now. I think they would far outweigh any small reduction in your Peg right now. Hell....Your odds before you even started were around 80%+ anyways. I think you'll be fine. If you really HAVE to worry about "something" then worry about that thyroid right now. It's the type 1's that really have to perform a real "balancing act" with all this stuff.
Try not to stress yourself out over the Peg reduction. The stress is worse for you than anything else right now. If you just can't stand all the pressure anymore....go out and kick a Badger. GOD...I used to LOVE doin that. It WILL take your mind off of everything when you see those teeth of his.......

[CARUU]

Hi and thanks for the reply.  For the most part I agree with everything you had to say.  I'm quite hopeful that I'm on the path of slaying the dragon.  The thyroid problem is something else to worry about and I don't know enough yet to make any kind of reasonable assumptions (just what I've read on the net and that can sometimes be TOO MUCH information).  I'll have to think about your recommendation to kick a badger.  First I'll have to find one and then I'll have to get up the strength to do it. Ha, that would be quite a site, me in my back yard, in my pajamas, kicking a badger!  Yeah, I'm female.  I'm working on creating a stress free environment where I can finish off the dragon and get the rest of my life under controll.  Thanks for all the great info/advice! caruu

[Galen]

I reccommend seeing another doc if yours is so dead set against Procrit and Neupogen.  I did both from week 9 through 48 and kept the drugs at full dose with them.

[Wireboltman]

Does anyone have any experience or ideas concerning being on the Peg Intron/Ribavarin and contact with sick people? One school of thought seems to be that the interferon wards off any virus just because of it's very nature. Having all low blood counts and a 1.1 neutrophil count gives me a little cause for concern as I visit my 88 yr old mother 7 days a week at the nursing home. The nursing home has been quarintined a couple times already because of the flu this year. The daily visits from my brother and myself are the only things she has to look forward to. She's not doing all that well. As poorly as I feel, I would have to feel a lot worse before I would deny her that small pleasure. Unless of course, my own health or lack of it were to become more of an issue than it already is.
Any information would be greatly appreciated once again-
Thanks,
Dave

[raheem]

My WBC is currently 1.1 and my ANC (absolute neutrophil count) is 451 which puts me at the "severe neutropenia" level. I believe I am at a very high risk for infection so I have curtailed social obligations and contacts (dinners, parties, wakes, funerals, shopping, etc.)  I'm on week 34/48 so I only have about 3 months left for tx.  I'm not going to blow it now by going to a super bowl party, I'll gladly take a rain check on that one.  A dying friend or relative...certainly presents a different risk/benefit analysis of moral or ethical judgement.  All I would say is "a clear conscience is a soft pillow".  If you can sleep at night without it bothering you, you are doing the right thing.

[Ambush]

Dave, Your mother must be a great lady to have raised two wonderful sons like you and your brother.  I don't know much about germs, I just know special when I see it.
ambush :)

[DebbieDo]

Wonderful info ......i thank you ........going to get ready now for #4.....wish me luck.....i dont want to stress on this like i have other weeks.......tonight will be a breeze.......lookout Dragon......here it comes  :)

[CARUU]

You sound like a great guy!  Ditto what Ambush said. caruu

[DebbieDo]

I will never get use to giving myself this shot.....its so frustrating, i have such a hard time filling the vile with the meds.......i hate it.......i wanted to say forget this.......
then i finally loaded the gun.......and wam......by the time i gave myself the shot i was so damn nervous....as i was sticking the needle in injecting the meds the needle moved in further and i finished.......i will never get use to this....i have the hardest time filling the vile.......gezzzzzzzzzzzz does anyone else experience this problem........
           signed "frustrated"  :(

[CARUU]

My first few times were worst.  I was kind of nervous.  It helped to watch the video and then follow the steps in the booklet the first few times.  Now it's no big deal.  I follow these steps:
1. clean the counter area with Lysol cleanser and spray
2. assemble all necessary items (med, needle, alcohol wipes, sharps container, paper towels)(roll vial between palms of hands for 1 min. to warm the med.), cut alcohol wipes packages open with scissors and pull them partially out so they will be easy to grab when you need them.
3. wash hands and turn water off/dry hands with paper towel
4. open vial of med and clean top with alcohol wipe (leave wipe on top of vial
5. clean skin area where you will make injection with the other alcohol wipe and let it dry
6. open/uncap needle and pull back plunger to your intended dosage (ie. 1 cc)
7. invert the needle and insert it into the vial that is sitting upright on the counter
8. push air from needle into vial
9. turn both vial and needle over and then pull the plunger back to the intended (ie. 1 cc) mark.  This will fill the needle with 1 cc of medicine.  Tap on needle to remove any bubbles from med.
10. turn vial and needle over with vial sitting on counter, withdraw needle from vial. Hold needle upright and push any air out of the needle until you see a drop of medicine come out of the needle tip.
11. pinch skin area where you will make the injection
12. insert the needle into skin at a 90 deg. angle
13. pull back on needle to be sure there is no blood
14. slowly inject medicine
15. remove needle from skin and rub area with alcohol wipe
16. cap needle with the attached needle guard
17. dispose of used needle in sharps container

This is off the top of my head.  Once I had the steps memorized, the whole process became very easy.  Good luck, it will get easier.  caruu

[Showboat]

I think anxiety starts building up in our minds subconsciously the day before tx, at least that is how I started out on my very first dx series.  I never thought I could ever do it.  My first baby shot was done in front of the nurses....they were very supportive (I think it was lunch time : > 8) very positive, and they gave me an option to come to the clinic on shot day, so that I might be comfortable adjusting to do it with them around.   I decided that my husband would be my "Coach".  Bless his heart.  It would sometimes take me 45 minutes just to get convinced to even have the goal to "jab"
He would stand by me, coaxing me and I would be crying and mumbling. I was such a whimp...giving me positive statements, Rah, Rah, Rah...what a guy.  I would begin to get "flippy" and "nervous".  I jabbed many oranges to learn the procedure, but hey, my skin was my skin. yucky!  Good News is that we may never like doing it, we get our own style down.  Once we get our system down, we breeze thru it, and we are done and ready for our next thing.  My favorite part of "shot night" is really pushing the used needled into the container.....never to be seen again, and checking off each shot # that hangs on my refridgerator.. #33/48 tomorrow...oopps later today, it is now 1:30 AM...Goodnight all

[Showboat]

sorry....my last post was to debbiedo.  Good luck

[jevs2]

Hi Louise,
I'm in the UK and I deliberately put on weight before tx to compensate for weight loss. I used to drink 'Nourishment' which you can buy in various flavours from newsagents and corner shops. It comes in a can from the chill cupboard.
I found vanilla or chocolate the nicest, costs £1 a can.
I think that they are about 400 calories each so if you eat 3 meals a day as well it should help.
Best wishes
Joanna

[mumsie]

where do you find all those badgers,have a stress free day everyone,gone hunting,...sue

[hillcountry]

My wife started interferon/rabavarin in Mar 2003.  She lost weight quickley due to the side effects, maybe as much as 40 lbs.  So during part of her treatment, she was getting more interferon/ribavarin then the "standard tables" required. The doctor called it a "hot" shot.  He then reduced her dose.  She was very sick [flu like ...]  However, the higher than normal doses may have helped her.  The odds were somewhat against her.  She was in her late 40's, overweight, and had the worse genotype.  She tested negative for the virus in August - this was the "senstive" test.  She has continued to take interferon and will stop in Mar 2004. She will sometimes skip the ribavarin because she just get's fed up with the side effects.  She has skipped her once a week shots maybe 2 or 3 times.  So possibly the higher doses may have helped her.

[jonihs]

I would discuss it w/ Dr.or nurse, But I can't See any problems. I go visit my Mom and the whole staff knows I have Hep C and noone has said anything.     joni

[Juracan]

Just getting ready to start treatment today and thought I could get some support and guidance here.  I'm starting at 400 ribavirin and have already noticed that 800 is the low range.  Should I be concerned about the low dosage?

[nygirl7]

Juracan

It's been proven that weight based ribavirin is CRUCIAL for success while treating.  400 can't be weight based unless perhaps you weigh 50 pounds. Are you sure the doctor doens't mean 400 two times a day? That would make much more sense.

If not - find a new doctor because 400 is WAY too low and you should take the max amount that you can tolerate to help with your odds of success.  Without enough riba you will not make it.

[kimmypoo2]

400 is way low...call dr for verifaction