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Ribavarin Reduction
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.
I insisted on a viral load test at the 12 week mark last week and am awaiting the results.
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.
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.
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?
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
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.
where do you find all those badgers,have a stress free day everyone,gone hunting,...sue
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
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
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
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
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
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
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
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
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
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
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--
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--
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....
Thanks....
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!
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!
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
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
well off to the vampire session for blood work...later
kimmy
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
cheers
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.
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
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!!!
I'd stick with the lower dosage which sounds right for your weight. You'll do fine!!!
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
hang in there lou!!
kimmy
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
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
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