Aa
First dose night
Hey all, glad I came across this site. Tonight I start treatment. Pegasys and Copegus. I do go to a support group once a month and know a few people in recovery that have been through tx. I forgot to ask though... If I'm taking my first shot tonight around 9pm should I start the Copegus with supper or after my shot or tomorrow am? It took me a long time to finally get started and with all the questions I asked, suddenly I have another 1000 or so.
Strator
Strator
I have to tell you all that this forum has already helped me to be more pro-active with my treatment. One thing is, I grew up in the days of Dr's making housecalls and being treated like Gods. I have to admit the doc I had as a kid was phenomal. I still miss him. But anyways my drs office had told me to call and make an appointment for about a month after starting treatment. I noticed aome talk here about red/white blood cell counts being checked in the first few weeks. Also I came across some info about people having problems with treatmenmt due to also having high iron from Hemochromotosis. Well my Mom's brother(my boss) has Hereditary Hemochromotosis and I had never thought to mention it to my doc. This morning I called, asked about earlier checks than 1 month and mentioned my uncle's condition. The nurse pulled my chart and made an appointment for blood work next week to check it all out. NOw if I can just get off the ice cream...
Not surprisingly we have two different points of view :)
Giving opinions, suggestions and research reports is not stepping into a providers shoes, just supplying supplemental information for people to consider. That's what this discussion group is all about.
I agree there areas all of us should stay away from in terms of advice, but I don't consider what time to take your ribavirin as one of them.
-- Jim
Giving opinions, suggestions and research reports is not stepping into a providers shoes, just supplying supplemental information for people to consider. That's what this discussion group is all about.
I agree there areas all of us should stay away from in terms of advice, but I don't consider what time to take your ribavirin as one of them.
-- Jim
I have a quick question - I start on Friday night (4 days countdown now!). He did say to take the 1,000 Riba. The package from CVS says take the same amount all the time. Well that is FIVE capsules. Had it been pills I could break one a part.
Does it make a difference if I take three at night and two in the morning or whatever?
Does anyone else take 1,000? I don't want to make a mistake!
Also...got vitamins but basic ones. There is NO multivitamin without Vitamin A in it so I just got C, E, Zinc, Bcomplex and Selnium - things that are in a multi but no IRon, A or K.
Debby
Does it make a difference if I take three at night and two in the morning or whatever?
Does anyone else take 1,000? I don't want to make a mistake!
Also...got vitamins but basic ones. There is NO multivitamin without Vitamin A in it so I just got C, E, Zinc, Bcomplex and Selnium - things that are in a multi but no IRon, A or K.
Debby
the person in question stated they forgot to ask, I am supposing their physician, then they ask here when they should take their meds when they really should be referring the forgotten question to THEIR treating provider, that is all that I said. I would direct them to ask their provider, not tell them when to take their meds, that is stepping into their provider's shoes, in my opinion. It happens all the time here. The questions are asked all the time; i.e. "should I double my dose if I forgot the last one?" response should be: "ask your doctor". "Should I start my riba with the shot?" A:"ask your doctor what he wants you to do"
simple
simple
Yes, a PCR is a "viral load test".
It's possible though, that they may order a different type of viral load test in Canada. Ideally, you want a PCR with a sensitivity no higher than 50, although for an initial pre-tx screening they often use ones that only goes down to 600 IU/ml. Some pre-tx viral load tests don't even go down that low. But once you start tx, definitely see if you can get a test with a sensitivity of 50 or below.
-- Jim
It's possible though, that they may order a different type of viral load test in Canada. Ideally, you want a PCR with a sensitivity no higher than 50, although for an initial pre-tx screening they often use ones that only goes down to 600 IU/ml. Some pre-tx viral load tests don't even go down that low. But once you start tx, definitely see if you can get a test with a sensitivity of 50 or below.
-- Jim
same page here, you shouldn't even take dr's advice as gospel when it comes to hcv either!
But we do tend to do some things behind doc's back(look at snookie with his upping riba on his own, ;-}). I never would have tried to do that, oh no!. I am not the one who was thinking of extending on my own if the dr did not finally agree, not me! ;-]. Of course, I would have had to tell at least my PCP, as long as a professional provider knows what path you took, they can find you in the wilderness.
But we do tend to do some things behind doc's back(look at snookie with his upping riba on his own, ;-}). I never would have tried to do that, oh no!. I am not the one who was thinking of extending on my own if the dr did not finally agree, not me! ;-]. Of course, I would have had to tell at least my PCP, as long as a professional provider knows what path you took, they can find you in the wilderness.
I won't go into a lengthly explanation again of why I take ribavirn with a high-fat meal or it's timing. Hopefully, the opinions and information I've provided will help others make some decisions.
But I do want to point out that these are my opinions/analsyis and most doctors simply will tell you to take your ribavirin "with food" or "with meals" or something of that sort. They tell you this because these were the instructions given during the peg/riba trials. Also, as others have pointed out, a high-fat diet is not necessarily the healthiest diet which also has to factored in.
Whatever you decide to do, I would be careful about any dramatic change in diet just prior or at the beginning of treatment as it may upset your digestive system. And while I take my riba with a very high-fat meal, my recommendation to others has always been to take it with at least a "moderate" amount of fat. Remember, I also have a serious weight loss issue as well.
Regarding the water, one rule of thumb is to drink half your weight in ounces. So if you weigh 100 lbs, drink 50 ounces of water a day. Some people drink a gallon. Above that you have to be careful you don't over-hydrate.
-- Jim
But I do want to point out that these are my opinions/analsyis and most doctors simply will tell you to take your ribavirin "with food" or "with meals" or something of that sort. They tell you this because these were the instructions given during the peg/riba trials. Also, as others have pointed out, a high-fat diet is not necessarily the healthiest diet which also has to factored in.
Whatever you decide to do, I would be careful about any dramatic change in diet just prior or at the beginning of treatment as it may upset your digestive system. And while I take my riba with a very high-fat meal, my recommendation to others has always been to take it with at least a "moderate" amount of fat. Remember, I also have a serious weight loss issue as well.
Regarding the water, one rule of thumb is to drink half your weight in ounces. So if you weigh 100 lbs, drink 50 ounces of water a day. Some people drink a gallon. Above that you have to be careful you don't over-hydrate.
-- Jim
Seperate corners please, no seriously you guys are quite entertaining. The sad part here is that I have learned more from this forum and other research sites than alot of doctors out there, that are treating hep c patients.
BUT, it is the internet and I hope everyone that comes here is smart enough to realize that. Nothing said on here should ever be considered gospel. We've said many times that we have to be proactive in our treatment, and that means being armed with knowledge. How many times have you heard of some of the most a** backwards discissions made by doctors. At least we can help people questions there treatment instead of following some of these doctors blindly.
I've read countless cases that I know because of the doctor's treatment protocol it cost someone SVR. thanks for listening
BUT, it is the internet and I hope everyone that comes here is smart enough to realize that. Nothing said on here should ever be considered gospel. We've said many times that we have to be proactive in our treatment, and that means being armed with knowledge. How many times have you heard of some of the most a** backwards discissions made by doctors. At least we can help people questions there treatment instead of following some of these doctors blindly.
I've read countless cases that I know because of the doctor's treatment protocol it cost someone SVR. thanks for listening
Fat Fat FAT! I have always had a low fat regimen so it's going to be odd for me to change...but darn it for my tx I can! ;-) LOL kind of like a pregnant lady with a license to eat! hahaha. I'm kind of looking forward to it! Bacon....ahhhh the things I usually avoid but now have an EXCUSE to eat!
I can't tell you how valuable your advice has been to me personally. I went in a week or two of being completely ignorant to actually sounding like I know what I am talking about. Even the doctor was laughing so hard he couldn't figure out what happened to the girl who couldn't think up ONE question.
I am going to drink so much water this week that I will be on the point of gagging all the time. Since it really seems to help with the sides...I'd rather do that (and eat fat stuff) than be ignorant and just do what I normally do.
A lifestyle change is definitely what this tx is about. As stubborn as I am...I can see that!
I can't tell you how valuable your advice has been to me personally. I went in a week or two of being completely ignorant to actually sounding like I know what I am talking about. Even the doctor was laughing so hard he couldn't figure out what happened to the girl who couldn't think up ONE question.
I am going to drink so much water this week that I will be on the point of gagging all the time. Since it really seems to help with the sides...I'd rather do that (and eat fat stuff) than be ignorant and just do what I normally do.
A lifestyle change is definitely what this tx is about. As stubborn as I am...I can see that!
I'm going to simplify my last post and simply suggest you take the three pills with your largest, fattiest meal -- be it bkfast or dinner -- and the two pills with the smaller, less fatty meal. My guess -- and it's only that -- is that is why Cuteus' doctor tells her to take the three riba with dinner, which for most people is their largest meal, but that doesn't hold true for everyone. My largest meal is breakfast.
Having said that, if you find yourself having trouble sleeping at night, you could try going with two riba at night and three in the morning. In this case, I'd just make sure your breafast has at least a moderate amount of fat in it.
-- Jim
Having said that, if you find yourself having trouble sleeping at night, you could try going with two riba at night and three in the morning. In this case, I'd just make sure your breafast has at least a moderate amount of fat in it.
-- Jim
Everyone on tx has a doctor or by definintion they wouldn't be on tx. Most therefore come here looking for second opinions or "reality checks" based on the experience of others and/or their doctors. If you read my posts, you know I refer people to see a doctor when appropriate. Given the question, topic and weekend nature, the advice given was qppropriate.
your dr should have instructed you how to take them, if not, insist on someone in the office to tell you( yes, breakdown the door if you must). This is another example of drs' different opinions. Some here were taking 3 ribas in the am and two at night, mine told me to do the opposite. Make sure you are on the same page with him/her.
Easy if you can get your doctor to call you back. ;-)
Mine takes days. Hopefully I will get him by Friday...if I have to knock down his door.
Mine takes days. Hopefully I will get him by Friday...if I have to knock down his door.
Wish I was joining you all n your first shot, but FINALLY I got my call today from the nurses that are putting the study together, Sunday, which was a surprise, they have been working overtime, I go for bloodwork Sept 22 and start tx oct 24 if all goes well with lab results, I guess. I am going to ask for a PCR as someone said they are expensive and don't do them here in Canada, shall inquire. Is a viral load and PCR the same test or no? I am going to have a consult visist with my GP and make sure she will make Procrit etc; that i have learned from all of you available for me and Neupogen, is there anything else important I should include, thanx, much appreciated, I have all of you to thank, i was clueless till I came on here, best health to you all
A timely question LOL. It seems ribavirin timing is becoming another one of those topics here. :)
As Cuteus' suggests, yes, always ask/run things by your doctor --
but having said that, it really doesn't matter whether you take two in the morning, three in the evening or vice versa. The reason it doesn't matter is that riba has a 100 hour half life so the trick is just to get the entire dose down the chute each day with at least a moderate amount of fat as has been discussed before.
Riba does keep some people awake so if that's the case I'd suggest three in the morning and two in the evening, unless you prefer to sleep during the day. :) If, on the other hand, your dinner tends to be your largest, fattiest meal -- then I'd consider taking the three pills with dinner and the two with your smaller, less fatty meal. No harm done if you experiment both ways.
I base the above suggestions on discussions with three heptologists, two NP's, a leading riba researcher, research reports, and my own analysis of the aforementioned.
Congratulations with getting started! Good luck with the first shot!
-- Jim
As Cuteus' suggests, yes, always ask/run things by your doctor --
but having said that, it really doesn't matter whether you take two in the morning, three in the evening or vice versa. The reason it doesn't matter is that riba has a 100 hour half life so the trick is just to get the entire dose down the chute each day with at least a moderate amount of fat as has been discussed before.
Riba does keep some people awake so if that's the case I'd suggest three in the morning and two in the evening, unless you prefer to sleep during the day. :) If, on the other hand, your dinner tends to be your largest, fattiest meal -- then I'd consider taking the three pills with dinner and the two with your smaller, less fatty meal. No harm done if you experiment both ways.
I base the above suggestions on discussions with three heptologists, two NP's, a leading riba researcher, research reports, and my own analysis of the aforementioned.
Congratulations with getting started! Good luck with the first shot!
-- Jim
"In fact, I've heard you often give contrary criticism/advice about treating doctors, for example in the area of anemia/Procrit administration."
yes, but not to newcomers that have not discussed things with their doctors first. Always direct them to their physicians first if they have not done so.
Oldtimers who ask when to stop the riba, should be directed to their dr, etc. We should be discussing things with our physicians first, then get opinions from others and decide what to follow, but if we decide different than dr's suggestions, we should inform him/her of what we are doing. nes pas?
yes, but not to newcomers that have not discussed things with their doctors first. Always direct them to their physicians first if they have not done so.
Oldtimers who ask when to stop the riba, should be directed to their dr, etc. We should be discussing things with our physicians first, then get opinions from others and decide what to follow, but if we decide different than dr's suggestions, we should inform him/her of what we are doing. nes pas?
Congratulations on making it through your first shot. The Stones didn't come on till a little after 9:00 so I actually was thinking about you at 9:00. They were great by the way--better then the last time I saw them 40 YEARS ago. (Of course I payed 20 times as much for tickets this time around.) We should all wish for Mick's incredible energy post treatment--he must train fanatically. Today he is my poster child for the possibilites of good health as we age.
Tracy (54 year old female, 1A, stage 2/grade2 probably HCV since the late 70's)
Tracy (54 year old female, 1A, stage 2/grade2 probably HCV since the late 70's)
If you read the entire thread, you'll find different opinions on how to take riba. Surprise. :) Surprise. :)
Keep in mind the half-life of ribavirin is 100 hours which is why many in the know are not concered about taking it exactly 12-hours apart. The trick is to just get it down the chute every day without reducing dosage.
For those anal enough to care, here is the nutritional breakdown of the "high-fat" meal cited in the study where the bioavailability of riba was increased up to 70%. Again, no clinical significance is noted but then no studies were done regarding clinical significance.
841 kcal, 53.8 g fat, 31.6 g protein, and 57.4 g carbohydrate
I'm not suggesting anyone try and emulate this meal, just putting forth information. In my case, the "high-fat" approach worked well for me because I need to eat that way in order to maintain weight on treatment. Currently I'm down 30 lbs from pre-tx and trying not to lose any more.
As to the sun on treatment, we all react differently so best to test your own reaction by gradually increasing your exposure each day. In my case, I take UVB-Narrow band (burning rays) light therapy 3X/week for psoriasis. This light source is harsher than real sunlight. I also sunbathe when I can't get to light therapy. What I've found is that my face has become very sensitive to the sun so I cover it with a strong sunblock. The rest of my body tanned normally but with somewhat less exposure. Your mileage may vary. Newer studies on the general population show a little sun on a daily basis is healthy for you.
-- Jim
Keep in mind the half-life of ribavirin is 100 hours which is why many in the know are not concered about taking it exactly 12-hours apart. The trick is to just get it down the chute every day without reducing dosage.
For those anal enough to care, here is the nutritional breakdown of the "high-fat" meal cited in the study where the bioavailability of riba was increased up to 70%. Again, no clinical significance is noted but then no studies were done regarding clinical significance.
841 kcal, 53.8 g fat, 31.6 g protein, and 57.4 g carbohydrate
I'm not suggesting anyone try and emulate this meal, just putting forth information. In my case, the "high-fat" approach worked well for me because I need to eat that way in order to maintain weight on treatment. Currently I'm down 30 lbs from pre-tx and trying not to lose any more.
As to the sun on treatment, we all react differently so best to test your own reaction by gradually increasing your exposure each day. In my case, I take UVB-Narrow band (burning rays) light therapy 3X/week for psoriasis. This light source is harsher than real sunlight. I also sunbathe when I can't get to light therapy. What I've found is that my face has become very sensitive to the sun so I cover it with a strong sunblock. The rest of my body tanned normally but with somewhat less exposure. Your mileage may vary. Newer studies on the general population show a little sun on a daily basis is healthy for you.
-- Jim
Well, I just jumped on the same bus Strator! 1st shot tonight (Saturday) at 10:30 PDT. Wow, just 47 left to go!
I'll refrain from pithy comments about first time jitters and it being over in no time. That just wouldn't do.
Sleep well,
Goofy
I'll refrain from pithy comments about first time jitters and it being over in no time. That just wouldn't do.
Sleep well,
Goofy
The Riba doses should be given 12 hours apart.....example 8am and 8pm to maintain an even level of medication in your blood. The virus can double in number every 4 hours if the effewct of the Riba is not enough.
Taking the Riba with fat....(a tablespoon of peanut butter is enough) makes it peak faster....however, the significance of doing this is unknown.
The usual recommendation is that if you take it with food then always do it that way....same if you take it on an empty stomach. My opinion? with food.
Silvia
Thanks. Now that's a beacon of hope. You're taking a shot and then going to a Stones concert!I'm one of those people that don't get the lousy jobs done til there's something worse to do. I'm amazed how much work I got done this summer rather than start treatment. But I've run out of excuses. A year of talking to people about it rather than diving in has kept me anxious and I'm tired of getting fatiqued just as I get some work rolling. 3:30 is the magic pooped out hour for me too. Enjoy the music.
THANK YOU -THANK YOU -THANK YOU.....you and others have always been a good dose of anti over worry medicine. I checked out the web sites too..thanks kristin
Yes, my first shot was by far the worst for me. The second was real great b/c I had a terrible migraine. The meds seemed to cause my migraines to kick up much more often than pre-tx and once got those under control, my sx were very light with the exception of the anemia.
Good luck to you. Hang in there. I did 48 wks it was worth it in the long run. Just had blood drawn for my 1-yr post-tx PCR last week.....will hear back this week but I was clr at 6-mo post.
Good luck to you. Hang in there. I did 48 wks it was worth it in the long run. Just had blood drawn for my 1-yr post-tx PCR last week.....will hear back this week but I was clr at 6-mo post.
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