Aa
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.
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.
I am 1b and i take 1200 a day of Riba.....is this normal .......tomorrow i will do shot #4
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.
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
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
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
my pegasys was decided by weight. I'm starting the big TX tomorrow LOL Everyone wish me luck! I need it!
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.
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)
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)
Thanks for the info. I thought it was the other way aruond. Stick arond if you can. We need you! Joni
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
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.
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
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
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
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
