Ribavarin Reduction

[Roadway]

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.

[kimmypoo2]

400 is way low...call dr for verifaction

[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.

[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?

[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

[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.

[mumsie]

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

[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

[Showboat]

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

[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

[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

[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]

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

[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  :)

[Ambush]

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 :)

[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.

[Roadway]

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-

[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.

[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

[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.......

[JamesL]

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

[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.

[Roadway]

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.

[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.

[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.