Aa
Labs all Perfect
Went to the Doc yesterday, labs all perfect, doesn't even look like I'm being treated, in 3 weeks she has ordered a quantitative Hep C to see if there has been a drop in viral load. She was real happy about the results, I asked if there was a correlation between labs being normal and treatment not being successful she said not at all, it just makes it easier to treat me, without the nasty drops, in RBC and WBC. Have a great day!
Diana
Diana
Hey Diane:
What great news. I hope your counts stay on track and you are able to dodge any of the extremes some have had to deal with. Dale
What great news. I hope your counts stay on track and you are able to dodge any of the extremes some have had to deal with. Dale
We have a member "Fishdoc" whose consulting doctor said that her high hgb (hemoglobin) level while treating may suggest she is not absorbing as much ribavirin as he would like.
There have also been studies done in Sweeden correlating anemia with serum ribavirin levels and SVR -- in other words, the more anemia, the more riba is entering your system which is good.
Then again, a very recent study -- can't seem to locate that study -- seems to contradict the earlier Swedish studies and could not find a correlation between anemia, serum riba levels and SVR -- or maybe it was RVR in this study.
I'm not saying that your "perfect" labs are good or bad but just that you might discuss the riba issue with your medical team if your hgb keeps holding constant.
What is your genotype and weight and how much ribavirin are you on? Also, in case your not, it's a good idea to take your riba with food, preferably with a decent fat content as this helps riba absorption.
Lastly, don't know what week of tx you're on, but a week 4 PCR is always a good idea and would probably clear up some of these issues in the sense of measuring your early response to the treatment drugs.
As you probably know, there are no doctors here, so take all opinions with that in mind.
-- Jim
There have also been studies done in Sweeden correlating anemia with serum ribavirin levels and SVR -- in other words, the more anemia, the more riba is entering your system which is good.
Then again, a very recent study -- can't seem to locate that study -- seems to contradict the earlier Swedish studies and could not find a correlation between anemia, serum riba levels and SVR -- or maybe it was RVR in this study.
I'm not saying that your "perfect" labs are good or bad but just that you might discuss the riba issue with your medical team if your hgb keeps holding constant.
What is your genotype and weight and how much ribavirin are you on? Also, in case your not, it's a good idea to take your riba with food, preferably with a decent fat content as this helps riba absorption.
Lastly, don't know what week of tx you're on, but a week 4 PCR is always a good idea and would probably clear up some of these issues in the sense of measuring your early response to the treatment drugs.
As you probably know, there are no doctors here, so take all opinions with that in mind.
-- Jim
Probably should add don't take riba with antacids. Make sure to space the antacids a couple hours away for maxium riba absorption. Same with Flax or Metamusil, as they can also impede absorption. OK, however, to take PPI's like Nexium or H2 Pumps like Zantac with the riba.
That's great Diana hope it stays as good for you.
Jim - wow if what you say is right then maybe my bod is really working with the Riba and ifn to get me healthy. don't know if you saw my post about hgb but went down 5 pts in 2 weeks. if so then maybe UND is right around the corner???? Wishful thinking. But hey I am the ever optimist
Jim - wow if what you say is right then maybe my bod is really working with the Riba and ifn to get me healthy. don't know if you saw my post about hgb but went down 5 pts in 2 weeks. if so then maybe UND is right around the corner???? Wishful thinking. But hey I am the ever optimist
Let's certainly hope so!
But as mentioned, some studies say this, another says that. In any event, measuring riba absorption by tx hgb levels while potentially valuable, is still pretty crude compared to what the Sweedish researchers do -- which is to actually measure the riba in serum using HPLC technology. A test unfortunately not readily available in this country the last time I checked.
Hopefully, you're doing OK with that high hgb drop. Forgot if they put you on Procrit or not. I had only a 3 point drop in 2 weeks and ended up in the ER. But I'm male and 58 at the time -- two factors not in my favor in that regard.
All the best.
-- Jim
But as mentioned, some studies say this, another says that. In any event, measuring riba absorption by tx hgb levels while potentially valuable, is still pretty crude compared to what the Sweedish researchers do -- which is to actually measure the riba in serum using HPLC technology. A test unfortunately not readily available in this country the last time I checked.
Hopefully, you're doing OK with that high hgb drop. Forgot if they put you on Procrit or not. I had only a 3 point drop in 2 weeks and ended up in the ER. But I'm male and 58 at the time -- two factors not in my favor in that regard.
All the best.
-- Jim
What week are you on? If your hemo isn't going down at all and remains in the high range - I would definitely, positively look into increasing it pronto! Having as high a serum level as possible during the first twelve weeks is important.
If you don't see any sides or effects from the ribavirin...then like Fishdoc's doc suggests - I don't see how enough riba is getting in there. It's so crucial to be maxed out on the dosages in the first 12 weeks it's almost like you WANT your numbers to go wonky so you can see enough is getting in there (of course...nobody wants the anemia).
Do you have any ribarash or any sides from it at all?
If you don't see any sides or effects from the ribavirin...then like Fishdoc's doc suggests - I don't see how enough riba is getting in there. It's so crucial to be maxed out on the dosages in the first 12 weeks it's almost like you WANT your numbers to go wonky so you can see enough is getting in there (of course...nobody wants the anemia).
Do you have any ribarash or any sides from it at all?
"If you don't see any sides or effects from the ribavirin...then like Fishdoc's doc suggests - I don't see how enough riba is getting in there. It's so crucial to be maxed out on the dosages in the first 12 weeks it's almost like you WANT your numbers to go wonky so you can see enough is getting in there (of course...nobody wants the anemia)."
This is a very big statement and your not the first to make it. what are we basing this on? is there any studies to back this up. Because it reads life a fact.
This is a very big statement and your not the first to make it. what are we basing this on? is there any studies to back this up. Because it reads life a fact.
The statements that at least I've made in this area are based on the work of the Sweedish riba researchers -- Lindahl and Company. Most pertinent one of her very early papers that suggests a link between anemia and serum riba levels. I got a copy of this paper at a med library and could not find it on the net when searching for it the other day after Fishdoc posted.
However, as mentioned, I did see a recent study that seemed to contradict anemia correlating to serum riba levels and I believe RVR. IMO Fishdoc's doctor is basing his strategy at least partly on the Lindahl work HOWEVER Fishdoc was not showing sufficient viral response which may add some fuel to the approach her doctor is saying. That's why I thought it couldn't hurt for her to ask her med team to order a PCR now which will give more data.
But you are correct, there's nothing I know of that definitely suggests that lack of symptons means your chances of SVR may be hurt, or even that not enough riba is getting into the system. However, it does give this non-professional a little pause.
-- Jim
However, as mentioned, I did see a recent study that seemed to contradict anemia correlating to serum riba levels and I believe RVR. IMO Fishdoc's doctor is basing his strategy at least partly on the Lindahl work HOWEVER Fishdoc was not showing sufficient viral response which may add some fuel to the approach her doctor is saying. That's why I thought it couldn't hurt for her to ask her med team to order a PCR now which will give more data.
But you are correct, there's nothing I know of that definitely suggests that lack of symptons means your chances of SVR may be hurt, or even that not enough riba is getting into the system. However, it does give this non-professional a little pause.
-- Jim
My viral load went from 5.5 million to non-detect in 5 weeks while my HGB dropped only a point or so during same time. Later on my HGB dropped about 4 points total. Not sure if Riba cranks up that fast anyway to make a difference early on in tx. Also, Interferon affects HGB as well so who knows. True test is whether the stuff is gone. I would vote for early (4 week) PCR which I think is essential to proper evaluation of tx later on.
We're on the same page. And possiby the difference between the Lindahal paper and the more recent one is that the hgb levels were measured at different points in time during tx (or not) but really can't remember and don't have either paper handy. BTW love your subject line title :)
Personally, I would never base the effectiveness of the medication on the damage it's doing to my body. During 14 weeks of treatment so far, my hemoglobin has not dropped below 12.7, and the only other thing that has been low is my WBC, though not terribly so. I have not had any major or unbearable (uncomfortable and very annoying, yes, but not unbearable) sx. I acheived UND at 12 week PCR. (I understand this is all anecdotal, this is only so you know you're not the only one who is reacting so well). So please don't get discouraged, the tx could very well be working, we are all effected very differently, it just doesn't always seem that way when so many people comment on similar major issues they are having with sx. Remember, there are percentages for these things that you can see in the paperwork for the meds, which I know are now changing with further study, but 11% of patients on Pegasys and Copegus (on the doses you're taking) become anemic--you are twice as likely to lose your hair or get headaches--just wanted to balance out the field a bit here, I don't want anyone discouraged because they don't have "enough" sx. Of course, everyone's opinion is valuable.
Thanks so much for the positive, I value everyones opinion, I am so anxious to get that blood work done, I feel lousy most of the time, I cough alot at nite, does that count for sx, lol. In three weeks I'll know if its working just say a prayer for me.
Diana
Diana
I just ain't buyin the theory that unless your anemic, the Riba isn't working...That is pure BS!!
At end of tx, my Hemoglobin had only fallen to 12, this was as low as it dropped for the entire 48 weeks of tx. I was Rx'd 1000mg of Copeg, and took 1200mg the first 12 weeks. From then on I did a sort of pulse method where I would up it for a few days, say to 1600mg, then drop back down. Another member here also dabbled in this, and fortunately we both obtained SVR..
Even at that high of a Riba level, I did not need Procrit, or become clinically anemic.
If anyone of us walk into our Dr's office right now, that Dr will state that only a low percentage of people undergoing tx need rescue drugs.
At end of tx, my Hemoglobin had only fallen to 12, this was as low as it dropped for the entire 48 weeks of tx. I was Rx'd 1000mg of Copeg, and took 1200mg the first 12 weeks. From then on I did a sort of pulse method where I would up it for a few days, say to 1600mg, then drop back down. Another member here also dabbled in this, and fortunately we both obtained SVR..
Even at that high of a Riba level, I did not need Procrit, or become clinically anemic.
If anyone of us walk into our Dr's office right now, that Dr will state that only a low percentage of people undergoing tx need rescue drugs.
Good news! Did your liver enymes drop? Mine did a little at a time.
I don't think everyone has anemia or low hgb, but a lot of us do. Fishdoc's case was a new one for a lot of us, that's why it is being discussed again here. You are week 6?
Has your Hgb dropped at all? I was one of the lucky ones to have it drop 5pts in 2 weeks and talk about feeling like a walking corpse! YOu sure don't need that on top of sx's your having now. My hgb has been at 13 for over a month now. Now I'm hoping my riba is enough. I am taking 1000 and weigh 143. Those studies Jim mentioned do make us all wonder. I know there are those here that had no drops in Hgb and have achieved SVR.
Waiting for that PCR is a tough one! I remember mine. I was freaked out about taking it early and being dectectable. All turned out well. Yours' will too!
I don't think everyone has anemia or low hgb, but a lot of us do. Fishdoc's case was a new one for a lot of us, that's why it is being discussed again here. You are week 6?
Has your Hgb dropped at all? I was one of the lucky ones to have it drop 5pts in 2 weeks and talk about feeling like a walking corpse! YOu sure don't need that on top of sx's your having now. My hgb has been at 13 for over a month now. Now I'm hoping my riba is enough. I am taking 1000 and weigh 143. Those studies Jim mentioned do make us all wonder. I know there are those here that had no drops in Hgb and have achieved SVR.
Waiting for that PCR is a tough one! I remember mine. I was freaked out about taking it early and being dectectable. All turned out well. Yours' will too!
Nobody is saying that you HAVE to have anemia in order for SVR but a complete lack of any sides COULD show an insufficient absorption of the Riba.
Since we know that the riba keeps the viral replication from happening - it makes SENSE to want the most possible serum level you can tolerate and the most absorption of the riba too.
More bang for the buck.
Since the sides appear to be the SYMPTOMS of Riba absoprtion - I'll go with my doc who told me that taking a higher dosage and tolerating the anemia like I did was the right move. He was quite pleased that I talked my GI into giving me the one extra pill - thought it was a very worthwhile gamble, even though my numbers have historically sucked.
So I think Dr. J. is one of those who believe this theory.
That is why I think it's as much "fact" as anything else on this board.
Does it apply to everyone? Yeah right.
Since we know that the riba keeps the viral replication from happening - it makes SENSE to want the most possible serum level you can tolerate and the most absorption of the riba too.
More bang for the buck.
Since the sides appear to be the SYMPTOMS of Riba absoprtion - I'll go with my doc who told me that taking a higher dosage and tolerating the anemia like I did was the right move. He was quite pleased that I talked my GI into giving me the one extra pill - thought it was a very worthwhile gamble, even though my numbers have historically sucked.
So I think Dr. J. is one of those who believe this theory.
That is why I think it's as much "fact" as anything else on this board.
Does it apply to everyone? Yeah right.
Painterlady - the riba absorption is DEFINITELY going on with you LOL. That is so totally one thing you don't have to worry about!
Having had a a 6 point in ten days - I know how totally devastating it can be so make sure you are VERY careful on stairs and don't drive and stuff if you absolutely don't have to.
Once I started fainting whenever I'd go to stand up I finally went to the doctors and got the Epo. Fainting in the shower was not a pleasant deal LOL.
Regarding GBI - if she is very new on treatment the riba just may not have gotten in there enough yet to cause the drops - that is my thinking (hoping, not that I'm wishing her anemia but you know what I mean).
Having had a a 6 point in ten days - I know how totally devastating it can be so make sure you are VERY careful on stairs and don't drive and stuff if you absolutely don't have to.
Once I started fainting whenever I'd go to stand up I finally went to the doctors and got the Epo. Fainting in the shower was not a pleasant deal LOL.
Regarding GBI - if she is very new on treatment the riba just may not have gotten in there enough yet to cause the drops - that is my thinking (hoping, not that I'm wishing her anemia but you know what I mean).
I'm on 1200 mg of Riba, this is week six for me, my weight is 190#, and lets just say I'm 6'3", see now I'm height and weight proportionate,lol, no I'm 5'6, I understand what your saying thats why I asked her, no rash, but I have nausea, headaches, fatigue, aches and pain you know the general malaise. Pegintron, .5ml
That is great news, you must be on cloud 9. This is a great day for you.
Beagle :)
Beagle :)
Instead of waiting three weeks to order a PCR, maybe you can convince the med team to order one now. Hopefully, you'll show a good viral response to the tx drugs, but it not, I think you might have a good case to present to them for upping the riba, assuming your hgb pretty much remains where it is.
All the best.
-- Jim
All the best.
-- Jim
here is a good article to read on Procrit and HCV tx, it prevents relapses in some people, by keeping them on tx, and maintaining a decent QOL, it also speaks of the safety issue.
http://tinyurl.com/fmloh
http://tinyurl.com/fmloh
Kalio: He also says people who need "rescue drugs" do not SVR in his experiene more often.
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Recent studies seem to contradict your doctor. Didn't read Cuteus' in detail but here's one that suggests "rescue drugs", i.e. growth factors do keep people on treatment at optimial doses longer and therefore do increase SVR rates.
http://www.hivandhepatitis.com/2006icr/ddw/docs/060606_a.html
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Recent studies seem to contradict your doctor. Didn't read Cuteus' in detail but here's one that suggests "rescue drugs", i.e. growth factors do keep people on treatment at optimial doses longer and therefore do increase SVR rates.
http://www.hivandhepatitis.com/2006icr/ddw/docs/060606_a.html
So much of this treatment seems to be guesswork, it's nerve wracking! They dont know exactly why Riba even works with Interferon, they just know when they added it to IFN more people cleared the virus. Much of Ribas' mechanism is still unknown. Since I am 3a and took 800/day Riba for 24 weeks and relapsed, I upped Riba but I have no evidence whatsoever that I relapsed due to not enough Riba. I have seen people post like Fishdoc who was not clear then she upped Riba and she reached UND so it seems it does matter. Maybe. lol
Who the heck knows! If it was me I'd up it. Second round I did 1600/a day for a month and cleared by week 4 so who knows. I take 1200/day now and so far, stil UND.
Hope you are feeling pretty good today. One day closer to the goal!
Who the heck knows! If it was me I'd up it. Second round I did 1600/a day for a month and cleared by week 4 so who knows. I take 1200/day now and so far, stil UND.
Hope you are feeling pretty good today. One day closer to the goal!
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