Labs all Perfect

[Gonna beat it]

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

[Dale_Ray]

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

[jmjm530]

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

[jmjm530]

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.

[painterlady13]

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

[jmjm530]

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

[GrandOak]

Great news Diana!!  How far along are you in tx again?

[NYgirl]

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?

[timedog]

"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.

[jmjm530]

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

[returntosender]

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.

[amirtracy]

We'll take all the good news we can get! way to go.

[jmjm530]

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 :)

[jennkPA]

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.

[Gonna beat it]

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

[Snookmiester]

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.

[sfbaygirl]

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!

[NYgirl]

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.

[NYgirl]

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).

[Gonna beat it]

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

[Mister beagle bailey]

That is great news, you must be on cloud 9.  This is a great day for you.

Beagle :)

[jmjm530]

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

[cuteus]

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

[jmjm530]

Kalio: He also says people who need "rescue drugs" do not SVR in his experiene more often.
--------------------------------------
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

[Kalio1]

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!

[Kalio1]

One study doesn't make it fact. I have read the study and so has my doctor but he sticks by what he told me. He could be wrong of course, but one study isn't sufficient to prove it true. He isnt like some here, he doesnt take study results as fact. Especially one study's results.

[sfbaygirl]

Much better today w/o the bone pain, thanks!!

It is a mystery about the Riba, I am sure we will find out, about how much Riba we should be taking. It obviously worked well at the beginning when I dropped 5pt Hgb in 2 weeks, but now it isn't dropping. It was about 16 when I started, so it still is 3 pts lower than before.

I was wondering about upping it, but the drug co. only sends me 140 pills a month. I KNOW they sent me 150 before. I asked them and they said, "oh well, we will send them again when you need them." Not the brightest bulbs there as 140 doesn't make it through the month when I need 5 a day.... I guess I need to call my worthless dr.

[mikesimon]

I too think the news is good with the caveat that normal Hmg level during TX might be something that should be looked at a bit closer. We hate anemia but it does seem to be a positive indicator for the  efficacy of TX. Good luck. Mike

[Kalio1]

My doc says he has quite a few patients with NO side effects that SVR. He says there is no correlation between the level of your side effects and the chance of you obtaining SVR. He also says people who need "rescue drugs" do not SVR in his experiene more often. As a matter of fact he said they are less likely to SVR because they sometimes have to stop the therapy before they have completed all the weeks needed due to blood evels becoming too dangerous.
I brought this up to him after hearing it here and because I have not used any rescue drugs. I asked if there was a connection to that and also if the level of side effects are indicative of SVR and his answer was an emphatic NO.

[NYgirl]

I think this is one of those things that if you use rescue drugs you are going to believe it's necessary to have a very marked riba problem and if you don't you are going to think you don't.

It makes sense to me but I would like to see those who have had anemia etc vs. not and the SVR rates.

Of course being in here with a group of whiners...we can't do it ourselves ;)

[Gonna beat it]

I guess its a matter of waiting to see what my levels are when I see her on the 12th, I'll just remain hopeful and grateful that the symptoms I have are not any worse, Monday I curled up on a 4 foot cot, at work and slept....Not sure what I would do with more symptoms.  Take Care and please keep a good thought for me.
My prayers go out to you all.


Diana

[Kalio1]

My Hgb levels are below my baseline from before tx but not "normal" during if normal is what you measured at prior to tx. You can have below baseline Hgb and not use rescue drugs too. I agree NY they need to look into this further but people do clear the virus who do not use rescue drugs all the time, so there has to be more to it than just Hgb level or use of rescue drugs.

[sfbaygirl]

Yes, many people don't need rescue drugs, but I think what some are saying is the Hgb drops some during tx. This may indicate if the Riba is working. Now that I am at 13 and normal, I am wondering if I should ask to up my Riba. What do you think?

[can-do-man]

Says........Now that I am at 13 and normal,.............

Now i know you gals tend to grow younger every year but 13 and NORMAL? You trying to bullsh*t and ole bullsh*ter?

[sfbaygirl]

Hey, we can have fantasies can't we? Although I KNOW I would never want to be 13 again! LOL  

Nah, these great tx drugs are making me younger! Almost like going to a plastic surgeon.

[Kalio1]

I had the same thing happen, I noticed I was only getting a 28 day supply so I called the pharmacy and they said "that is how we get them from the drug company" and to order them sooner so that I didnt run out. I guess they dont open the packages and just slap a label on them as is. Pretty confusing for the patient plus you have to remember to order them ahead of time or risk missing dosages. Oy vey.

one more thing on the other post..people do SVR with 800/riba a day, I hope I didnt give the impression that they don't.

[Snookmiester]

What is the mystery? More Riba, better chance at SVR.. Rescue drugs for those that need them, instead of dose reductions, equals higher chance at SVR..
All this is common sense, why the back and forth?

The debate here is whether or not anemia itself signifies the effectiveness of the Riba. Just because one person needs Procrit and another does not, does not mean that one has a better chance at obtaining SVR.. I was told that only the minority need rescue drugs, and those being the ones with more extensive damage(fibrosis) and health concerns, usually..
From a show of hands, there have been quite, and I say quite a few here on this forum that have suffered severe anemia, yet did not obtain SVR.. And looking the other direction, lots of members with minimal anemia(no need for rescue drugs), who inturn went on to "cure".. Myself being one of them.
To say that unless your seeing drastic drops in Hemoglobin and need Procrit to conteract the anemia to determine the effectiveness of the meds, is just about the most ridiculous statement I've heard on this forum to date.
Ask any Dr, the effectiveness of the meds is in your PCR's..Whether or not your obtaining undetectable statis, and when.. Not whether or not your CBC's are dropping..
Come on, get real!

[NYgirl]

I noticed that a long time ago and have to tell you whenever I"ve gone for ANY refill for the HCV they refill it.  Even the times I've either a. made a mistake or b. something was wrong with my syringe with the IFN - so I would have used them up to quickly...they never penalized me a bit. Pharmacist even told me dont worry about it we'll refill this as soon as you need it (when I was running around crying about the one redipen that was busted).

I believe as long as the doctor has had the scripts written and approved via insurance (ie: i know I was approved through September...last September when I started) - you just need to call them in when they run out.

I'm probably like 4 INFs ahead of schedule by now. But now i have to get approval for the next six months sheesh!

i've personally never had any real problem (except once I forgot to order the meds on a thursday for delivery on a friday cause they overnight them to the CVS...but CVS actually had 4 in stock, so I guess I'm not the only one who ever totally just forgot while on tx).

I really think they try anyway to make sure since we are on treatment for so very long that they help us out with that.  Very UNinsurancy type of thing but....

[Kalio1]

Are you sti on Procrit? I vaguely remember you mentioning what Dr.J said about Procrit but I cant remember what was said. Would you mind repeating what it was? As I recall he wanted you to ween off it? maybe? I could have you mixed up with someone else too, sorry if that is the case.

[sfbaygirl]

It's interesting that they do this. I'm not sure they would send extra Riba, although the script calls for it! My orginal script when I started in March said 180mg INF and 1200 Riba. When the pharmacy sent it, it said take 135mg INF and 1000 Riba. I called the dr and said I want to take 180 peg and he said, "as long as you can handle it." I mentioned that they had cut riba to 1000 from 1200. He said he thought I weighed more. I think I am right on weight based, now. But it's weird how these pharms can send us a different amt than my script says!!

Maybe I should order a little early so I can have a little stash too!

If they do go by 28 days, why did they send me 150 Riba at first? I think they have some problems at these mail order pharms.

[Kalio1]

I agree. When I call there the people arent the sharpest tools in the shed. I always have to wait for someone who knows something to come on the phone. Probably not the best paying jobs around. Order it early, see what happens! I have extra because they accidently sent me an extra month's supply out of the bue one day and when I called them to find out where to send it back to them they said "keep it" and sent the next month as usual.

[NYgirl]

He wanted me to drop down on the riba to 800 (cause at week 46 big deal - as long as I didn't reduce before (800 would have been the correct WBD for me...I just begged if you remember to take one EXTRA at 1,000 which is why I had such anemia issues LOL)

So that I could cut down from 2x 40,000 to 1x 40,000 and hopefully then take me off.

He said that the epothrymecin (i have NO idea what the real epo part of the epo was called but I got the picture) is naturally produced in our bodies BUT if I took too much I could get an autoimmune disease as to where not only would my body not produce it BUt that it simply would NOT work at all anymore. So in effect you could do 100 shots a week and the hemo would not go up at all.

So as of this week only one shot.  Should go get a CBC today but ugh ugh ugh ;)

Did that answer it?

It was all my doing for taking as much Riba as I did and going way over weight based.  I believe Jim had problems too.  But being a 1A/1B Dr. J said I completely made the right decision thanks Jim! :) and as long as I handled it...it was now ok to cut back to where I should have been.

If not for Jim I never would have used my own BRAIN to think it all through and base my decision on that...and I would have missed out. I am VERY glad I decided to go for it and thankful he did it before me so I could take his advice!

[Kalio1]

Yes, thank you that answered it. That is a ot of riba for skinny little you! One thing I have notied dropping riba from 1600 to 1200 is I do have more good days now. I agree with you dropping the eriba this te in the game will only help you feel better it will not compromise your tx. That is interesting what he said about the Epo. I hope the adjustments lead to you having less sides!

[Snookmiester]

Actually, they know EXACTLY how Ribavirin works..I've posted the link, many, many, many times..
This is exactly how my Doc also explained it to me during my first consultation for tx.

http://www.hhmi.org/news/pdf/crotty.pdf

[Kalio1]

http://www.hhmi.org/news/pdf/crotty.pdf

this link does't work.

[jmjm530]

I did reduce my riba for one week -- around week 36? -- from 1200 to 1000 because my hgb was starting to drop even with my 40,000 units/Procrit per week. Plus I was feeling like sh*t.

Well, a week later I still felt like sh*t so increased it back to 1200. LOL. I was also told that riba is less important later in therapy but with riba I'm a Sweede at heart, so I was stubborn and stayed with 1200.

But the fact you were on so much Epo suggests to me that Dr. J is guiding you in the right direction by bringing you back to 800.

Curious, did Dr. J itimate that potential autoimmune issues from epo could carry over past EOT (i.e. the body would stop making hgb as efficiently as before tx )or was it just that at a certain point the epo would stop working.

-- Jim

[NYgirl]

You know honestly I just read your question ten times and I don't know...I honestly only "know" that it scared me and I wanted off the giant numbers of Epo I've been on.  I wish I could take a stab in the dark and I will think tonight and look for my notes cause I know it SAYS it in there.  I'm just kind of stupid after working all day without a break.

It didn't sound like any new concept at all so I bet it's googleable.

I've never gone off the epo all this time...I did go down to once a week but slowly slowly went down with the hgb too. Of course I will honestly admit...I was popping more than 1,000 on some days and you know it...I learned from the best ;)

Hey...maybe I'm a Sweede and just don't know it?

[Kalio1]

They know that Ribavirin inhibits viral replication, but it does not work to clear HCV without Interferon. The two drugs work in tandem and how exactly that is done is not fully understood. One thing they do know is Ribavirin alone doesn't do the trick it is the combo that does it.

[jmjm530]

I was looking for a second opinion, but I did ask my doc a similar question when I was concerned post tx that all the epo I had taken would make it harder for my body to naturally produce hgb. It turned out to be a needless worry and my hgb post tx is the same as before tx, just took a little while to get there.

[Snookmiester]

I just retried the link, and it went through flawlessly..
Try curt and pasting, and if it doesn't work, I'll attempt to post a HTML...

http://www.hhmi.org/news/pdf/crotty.pdf

[FlGuy]

In c36 Snook writes "What is the mystery? More Riba, better chance at SVR.. Rescue drugs for those that need them, instead of dose reductions, equals higher chance at SVR" add to that, more time.  So my calculation is simple, longer + stronger = better chance.  Though it seems to disagree with WIN-R (geno 2,3) it seems to me that WIN-R is almost counter-intuitive.  And, I can't figure out why SVR % + relapse % does not = 100%.