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Avatar universal

Copyman, please provide your source

Morning Copyman, you stated in an earlier post below
"they say that for successsful tx a person should become anemic"
Who is "they" and could you please post a link to your source material.  TIA, Pro.
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146021 tn?1237204887
I think we see things the same because I'm the first to say weigh the risks and options before tx or continuing to tx. But I'll always have my emotion-based response and you will always have your fact based response. We're just different personalities. Aren't you a businesswoman, or had been opening a textile plant or something before tx? I don't have a business or financial gene in my body. I rely on instict and emotion too much but I can't change who I am or how I perceive things.
Thanks for responding.
Bug
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Avatar universal
The way I see it is if you approach medical care through your emotions and the prism of your determination to fight the disease and leave out the hard earned medically and scientifically established parameters ( ie statistical probabilities) and soldier on blind to the established statistics, I think you do yourself a disservice. As hard as it is to approach it intellectually we have to take off the rose colored glasses and face the hard facts.
We are not talking about small percentages here, your chances drop percipitiously if you respond slowly.I am not saying that therefore you shouldn't keep treating.  As OH points out, scientifically established medical treatment approaches are developed and based on statistical probabilities. As you know all too well these drugs can have consequences, patients have to evaluate and weigh the risk ratios and approach it from a nonemotional place or they are chasing rainbows and taking risks that might not be helping to mitigate their disease and could cause  MORE harm regardless of how determined they are. I think the point you make is that you can always be that ONE person who succeeds and I agree with you in spirit HOWEVER  the patient must be aware, fully aware, that they are shooting for that narrow margin ( if their goal is to SVR) and that the risks could outweigh the benefit. Again it would depend on the patients individual situation and all their factors. I don't say to people, you arent responding fast enough, you should give up. I say look at the situation and reevaluate your options adding your newly discovered decreased statistical chances. Damage level would become even more of a factor at that time in deciding to continue or stop. People on maintenance are on it to suppress the virus, even if they can't SVR, they can stop disease progression.

Believe me, I am a fight to the finish, support the underdog, statistics aren't people type of woman,  but to ignore such odds is to take the head in the sand approach.The difference is DRAMATIC. This is why they have established different categories of responders or non or slow responders, because the difference in SVR rates is so significant.
SVR is NOT the only goal of therapy for many, stopping disease progression is but if you are on this stuff you should be cognizant of that and approach it accordingly.

PS. I was happy to read that woman's post about clearing in spite of the odds but I have been visiting here for 2 years and stories like that are rare indeed.








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Avatar universal
high dose riba study
http://www.hivandhepatitis.com/hep_c/news/2005/021105_a.html
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163305 tn?1333668571
  Statistics is what our medical system bases its opinions on. So, if you are UND and stopping tx, 90% will relaspe. How do you know you aren't in the 10% that wont' relapse? You don't.
   I had a doctor once tell me that statistically speaking my skin rash was poison oak. I'd had poison oak many times and knew he was wrong. Statistically, he ws right. That doctor wouldn't change his opinion. I never went back to him.
  Personally, although its frustating I am glad my dcotor/researcher will answer me flat out, and say," we don't know."
   I doubt anemia helps improve SVR.Anemia is a sx of riba. Higher doses of riba may account for some improved SVR,although I've never heard of it.Who knows?
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Avatar universal
I don't think it has anything to do with the number of infected blood cells. If a perfectly healthy person - absolutely 0 HCV infected blood cells - took ribavirin and interferon they too would have a good chance of becoming anemic. Ribavirin destroys red blood cells and interferon to a lesser extent is involved because it suppresses the bone marrow where RBCs are produced and thus you get anemia. The relationship of anemia to SVR is probably due to ribavirin optimal dosing levels which explains why people with renal compromise need a lower dose to effect adequate and optimal dosing - their blood levels of ribavirin are higher that in someone with good renal function. It's all about the ribavirin - or at least almost all. Mike
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Avatar universal
I agree with you but then I find every aspect of this disease confusing. I didn't find this article entirely convincing but it does at least attempt to address your question. I believe I have more information on this issue somewhere but at the moment I cannot put my hands on it. If I manage to locate anything on point I will post it here but I am not optimistic that I will any time soon. Mike
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Avatar universal
I don't think I would have worded it exactly like "Copyman" was quoted, however some studies do suggest a correlation between anemia and RVR/SVR. Couldn't find the "Lindahl" study I was looking for but here's another study for co-infected HCV/HIV patients treating.

"...In summary, RBV plasma levels correlate with the development of anemia and with the achievement of an early virologic response. Therefore, early therapeutic drug monitoring might help to tailor RBV dosages, improving the efficacy and safety of anti-HCV treatment."
Abstract here: http://tinyurl.com/3xy2mo

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Avatar universal
To be very basic.....I do believe it correlates to amount of infected bloods cells....Taking down the amount of infected bloodcells and virus to a point that drug overwhelms both and then rescue is effected with a higher amount of drugs in system and the least amount of virus and/or tainted blood cells..Yes I CAN SEE HOW THIS WORKS......I'm 5'7 ,177 lb.s beginning of tx,with 1200 mg's Ribavirin/180 mcg's Interferon..I was going anemic in week 10-11,and bad anemic at week 12......But UND...<50...And am now NO HVC RNA DETECTED.,,,NONE detected what so ever...



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Avatar universal
thanks for the link Mike..It's all so confusing to me, \
from the same article
"Van Vlierberghe et al.[21] reported that neither change in hemoglobin level between pretreatment and week 8 nor ribavirin dose/kg of body weight had any influence on the EVR."
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Avatar universal
A "slow responder" has a dramatically reduced chance of the treatment working. If chances of SVR go dramatically low, that is important to know. When it comes to responding the importance of how fast you respond has been proven over and over. People don't want to hear it but they need to so they can adjust their strategy accordingly. It is hard to face that you aren't responding as you had wished but it should be recognized so the patient can adjust their goals accordingly. I know, I went through it myself. The goal of treatment is not only SVR,  a slow responder can still benefit from treatment but their chance of SVR are much much smaller.  This is a fact accepted by virtually all authorities on the subject. There are responders, slow responders and nonresponders. People on tx need to know which group they are in.
They need to be aware of this so they aren't being led down the primrose path and so they can analyse the situation and decide if the treatment is medically worthy for them and decide if treatment dosages should be changed or treatment length should be extended.  A person with little or no damage might be better off not taking all these caustic drugs if they aren't responding in a way that will benefit them.
If the person has substantial damage, treatment might still be viable  but they most probably will not SVR. They can adjust and individualize their therapies to try to improve their success. That is the reality. A nonresponder has even worse chances of success, almost nil, but they too can benefit from treatment in some way.







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Avatar universal
I agree with Kalio's post, above. For better or worse, studies/trials are a very important part of what determines an optimal treatment approach. Studies do suggest that slow responders do not have the same chance at SVR as normal or rapid responders. This is important information to help make treatment decisions by.

-- Jim
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146021 tn?1237204887
I agree with both of you, but you're quoting stats not real people in real situations. There was someone who posted a few months back that she was not UND till week 24 txed 48 weeks and still achieved SVR. She said 'don't give up, that's why they call it the odds'. I agree offer what info we have but make it clear that we are not able to determine if they need to continue or quit.
If either of you have more info to offer than stats from other trials I'm all ears. But stats are not a crystal ball or a sure  prediction of the future. When we come out and offer stats that are not taking into account each person's individual stats: weight, age, immune system, general health, diet, smoking, and exercise, we are not able to tell if they need to continue or not.
Enough said
Bug
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146021 tn?1237204887
Ok so I'm being a big baby and not rational. I hear what you're saying, but being the bleeding heart who deals with sick people on a daily basis, I just can't deal with black and white outcomes. It's all grey. I've had people who statistically didn't have a snowball's chance of ever making it thru the summer, but they did and went home, independently. I've had healthy fit patients go in a for a knee replacement and after up walking and exercising, fall dead of a stroke. I've written off people in my mind that showed me my mind can't predict the future. Seven weeks ago an 86 yr old came to us after being hospitalized for 4 months with infection in her knee and shoulder. (community aquired MRSA) I didn't say anything to her family but I thought it was ridiculous that they were so gung-ho when OBVIOUSLY they couldn't see how sick she was. She's going home, alone, to her apt next week.
No, I don't share my doubts with my patients or family until all hope is gone and the outcome is obvious. Yes, I'm a cheerleader on the side that keeps encouraging and trying to get this person up and moving and well.
My 59 yr. old mother went in for a hysterectomy and died the day after surgery. Did her good statistics prior to surgery keep her alive?
Had to rant. Can't blame it on riba.
I respect and admire the info you share. I get it but I can't buy into it.
Bug
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146021 tn?1237204887
I think we should all offer each other ALL the info we get and Mike Simon and Copyman are both trying to help. But it's just a numbers game, sometimes arbitrary.
A friend just sent me an e-mail and said "I do wish some people on the forum wouldn't talk .... as if they know THE answer. Someone called.....
a slow responder. But that doesn't mean she
won't clear! Its just numbers, from random research."
How true! That's why they call it chances. I might have an 80 % chance of svr but I also have a chance of not.
I personally believe that my hgb drop and my early response rate were linked, but that doesn't mean it's true. We do what we can and try not to look into the future. I guess I sound like I'm straddling the fence on the issue. I guess because I  am!
Bug
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Avatar universal
From:http://www.medscape.com/viewarticle/550731_4

".....By contrast, we found a significant correlation between the development of severe anemia before week 12 and EVR. Indeed, in our observation, development of severe anemia before week 12 was more closely associated with the EVR as compared with a decline in hemoglobin level between the pretreatment level and the level at week 8 or 12. The final average dose of ribavirin was significantly correlated with the time of hemoglobin below 10 g/dl during antiviral therapy (r=0.884, P<0.001). There was a significant linear correlation between the SVR rate and the time of hemoglobin <10 g/dl during therapy (r=0.774, P=0.003), especially among genotype 1 patients (r=0.960, P<0.001), suggesting that maintaining the optimal dose of ribavirin is important in achieving SVR for genotype 1 individuals.[8,20] Further studies are still necessary to confirm this observation, because genotype 1 patients in this cohort received only 24 weeks of therapy, which was not standard and the treatment duration might be insufficient.

In summary, a high incidence (39%) of our patients had experienced severe anemia during antiviral therapy, and development of severe anemia before 12 weeks of therapy was significantly correlated with the EVR. A significant correlation was observed between the SVR rate and the time of severe anemia during therapy in genotype 1 patients. Patients who were old (=50 years), female, and had low body weight (<65 kg) and platelet counts before treatment should be more carefully monitored for hemoglobin level during therapy."

Mike
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Avatar universal
Thanks for your response, we'll see what jmjm or anyone else has to say..
Personally (not to be disagreeable (G)) I don't agree that anemia has any relation to svr in a direct sense. In fact, I would think the opposite,anemia might result in not completeing treatment, thus reducing svr chance..Granted it is an indicator (hgb etc.) as to how a patient is tolerating the meds, and for possible adjustment of the dosages and helper drugs..I think medication serum level tests might be useful..I'm one of those borderline slow responders, 2 log plus drop, with 256 iu/ml vl at 12 weeks(undectable sometime within 5 weeks after)..My hgb has held well, so doc upped my riba at 8 weeks from 1200 to 1400 riba,and again at 12 weeks, 1400 to 1600..(approx. 33% above weight based dosage)...just rambling, but there has been so much thread focus on hgb levels of late, and it's difficult to draw conclussions(?) when most likely, those who haven't had anemia/hgb problems are far under-represented here on the threads. It's difficult to draw overall conclusions, it is such an individual diease, individual genos/strains, individual treatments (dosage/treatment length), individual sides/tolerance for the meds,invidual treatment results, etc...you can sure see why there is no quickfire, one size fits all solution...;(
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Avatar universal
sorry i should have been more clear on who "they" are. i have heard others that are tx'ing say this and i think i also have read about studies done on this. i flagged jim because i think he can answer this better then me.
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