Aa
treating hep c
To anyone listening, I've posted before about trying to treat to have kidney transplant,okay this is problem, they don't want to do the riba just interfron (can't spell that) and if I understand right the riba is what prevents the relapse. And if this turns out to be genotype one there is only like 15% cure rate, is this right? Okay the other part is I'm scared to death of dialysis, they threw me in before, traumatized me and then found out I didn't need to be there. I've lost my access for dialysis and that was really a very painful surgery to have and then lose before it was every really used. I'm not sick now, procrit keeps me going pretty good, but they are saying 11% kidney function, so how long can I last like this, that's not a question. I have living related donor for transplant, and what I'm wondering is transplant team said if got VL down below 200,000 thousand they could do transplant. So do I make myself sick with treatment and try to have transplant or not take a chance, bite the bullet and do dialysis for the rest of my life.Is it worth treating or not. God this could drive a person mad, I don't know what to do. What I'm wondering most about is if the VL can really go down that much, if anyone has any advice I'm listening. Thanks. Going nuts here.
Aubbie: Your 16th week will be here before you know it! And so will the 48th! I would have been excited to have a platelet count of 126! From week 2, mine averaged between 50-70. Now that I've been off for nearly 3 weeks, they remain slow to rise. Last week they only made it up to 96. Doc wants them up near 200 before he'll start the Infergen...so I cancelled my next appt cuz I knew I wouldn't make it by then. No sense in driving 2 hours to be told I have to wait another few weeks...that's an easy one to figure out.
SVR is possible...someday, someway, ... Best wishes to you. :)
Honey: Yes, I did have a very good drop...I was excited! But doc made it clear I was a non-responder and not a slow-responder. I feel great now that tx has stopped...actually realize how hard it was on me (and I'm sure my family too) now that I am back "normal"...well, I'm not actually normal, but...
I asked the doc if he would consider upping the riba doseage because Bill1954 and I had talked about it a while back...seems to be working well for him...couldn't get the doc to do it. I was devastated that day...still dealing with the shock...scared to do Infergen...but I've got to at least give it a try. There have been a few others here that have done it and reached SVR...hopefully I will too! :)
SVR is possible...someday, someway, ... Best wishes to you. :)
Honey: Yes, I did have a very good drop...I was excited! But doc made it clear I was a non-responder and not a slow-responder. I feel great now that tx has stopped...actually realize how hard it was on me (and I'm sure my family too) now that I am back "normal"...well, I'm not actually normal, but...
I asked the doc if he would consider upping the riba doseage because Bill1954 and I had talked about it a while back...seems to be working well for him...couldn't get the doc to do it. I was devastated that day...still dealing with the shock...scared to do Infergen...but I've got to at least give it a try. There have been a few others here that have done it and reached SVR...hopefully I will too! :)
Linda,,,,Looks like excellent advice from all the above. You will overcome this and look back on and realize how strong you really are. Please keep us posted! My prayers are with you!
Aubbie,,,Hang in there,,,you are doing great! About the time,,,sides get terrible and you want to quit,,,,its amazing but you will have an easy week and then can regroup and get ready for next challenge!
ASmile,,,,no 2 log drop but you have a very good drop and showed you were responding. Did you dr consider upping the riba dosage for a few weeks to see if that would kick the virus out?
Aubbie,,,Hang in there,,,you are doing great! About the time,,,sides get terrible and you want to quit,,,,its amazing but you will have an easy week and then can regroup and get ready for next challenge!
ASmile,,,,no 2 log drop but you have a very good drop and showed you were responding. Did you dr consider upping the riba dosage for a few weeks to see if that would kick the virus out?
Linda: In reference to your last statement "what a mess I've made"...please don't beat yourself up.....look at the present and to your future.....You can overcome anything you put your mind to. I've been there! I know you are feeling confused and conflicted about your decisions ahead and this is very difficult BUT it seems to me that you have a very good opportunity to get your virus level down and take advantage of getting your "new" kidney... As for the advice of the kind people above....all are very good points and lead to you taking the chance to lower your viral load. You have nothing to loose and the interferon may get you to the point where that transplant is possible and what a wonderful gift to yourself that is!!! Good luck in your decision. Your future is waiting for you!
Scott
Scott
Viral load can fluctuate a lot without drug intervention. Interferon is directly anti-viral, but that doesn't mean you mix interferon with the hcv in a petrie dish, the virus gets destroyed; what it means is the elevated interferon triggers or boosts the immune system to combat the virus. Treatment used to be monotherapy, interferon alpha alone (back in the old, OLD days! Apologies to those mono-therapy pioneers).
Ribavirin is thought to promote catastrophic mutations during viral replication, but only in conjunction with the interferon. By itself it isn't very good against the hcv; the interferon by itself does help combat the virus; together they pack quite a wallop.
I pray you are starting from a low viral load to start with. You have enough on your plate without one more thing adding to your burden.
I assume you don't, but the nanny in me (apparently a rotund, smart-ass) prompts me to warn against consuming tobacco, alcohol, and cocaine.
God bless! -Michael
Ribavirin is thought to promote catastrophic mutations during viral replication, but only in conjunction with the interferon. By itself it isn't very good against the hcv; the interferon by itself does help combat the virus; together they pack quite a wallop.
I pray you are starting from a low viral load to start with. You have enough on your plate without one more thing adding to your burden.
I assume you don't, but the nanny in me (apparently a rotund, smart-ass) prompts me to warn against consuming tobacco, alcohol, and cocaine.
God bless! -Michael
YES, your VL can decrease considerably with interferon alone. I agree with scruffy and jmjm, if all you need to do is lower the VL to get your kidney transplant, what do you have to lose...you may even reach SVR!
YES, treatment sucks...but is tolerable for most of us. I did 16 weeks of PegIntron/Riba, didn't clear or have 2 log drop (VL went from 1.9 to 44,000) so I am starting Infergen in 4-6 weeks. Scares the hell out of me, but hey, what do I have to lose? :)
YES, treatment sucks...but is tolerable for most of us. I did 16 weeks of PegIntron/Riba, didn't clear or have 2 log drop (VL went from 1.9 to 44,000) so I am starting Infergen in 4-6 weeks. Scares the hell out of me, but hey, what do I have to lose? :)
I sure hope so all this is all doing is worrying me to death, I've had to make some rough decisions in my life, but I've never felt so conflicted all at once. Thanks for the response they all helped, although i do feel like I'm drowning but everyone here makes good sense. Thanks
As I understand it-the riba causes hcv to mutate too quickly and reduces the chance it has of replicating well. The interferon actually destroys some or all of the existing virus but with interferon alone there is usually still healthy virus to once again replicate. The two together greatly increase clearance. If I am in error here trust that someone will most certainly follow with corrections.(I would hope.) frank
Thanks for kind words, don't drink at all, tobacco is a problem, everytime I quit they throw something else at me and here I go again, but that will stop, I currently smoke about 7 cigarets a day, but I do know even that is too much. My VL is 11 million 9 thousand, the GI said she had seen alot higher. So I assume that fairly high, I'm still learning about all this didn't know it was there till 2003 when I was doing transplant workup, I am a product of the seventies, back in the old drug days, they tell me that the Hep C caused the kind of kidney disease I have, it's just a really hard lesson learned. What a mess I have made. Thanks Linda
I am type 1 and cant wait for my 16th week, I hear its hard for svr for t-1.I cant think right sometimes and need to get stronger. I read your answer and it is so true what do I have to loose! But I am looking forward to that day, 16th week. My platlets are going down and I have some bruising, I have to get my lab work for today and see how how much lower than last weeks PLT 126 .Reading everyone story helps me see SVR is POSSIBLE.Nothing but wishing of good health to SVR. Good luck and GOD Bless, Aubbie
Thanks, at least I don't feel like screaming now, I just needed to hear something that made sense. I just called transplant ctr. to make sure that's all they want and if it VL goes down they will transplant. Just to make sure, but my husband and I both heard below 200,000. The dr. told me this at post-transplant evaluation, that was before we had PCR, don't have genotype yet. Mild inflammation, normal emzymes, and normal liver function. So it may be worth doing, the viral load can go down? Thanks
Hey Frank. Crossed posts happen all the time. You're writing your own, while someone is posting theirs.
I think your post however, is the better to the point. Given that she needs a transplant, taking a few shots of peg to get the viral load down seems like a good plan.
I think your post however, is the better to the point. Given that she needs a transplant, taking a few shots of peg to get the viral load down seems like a good plan.
Am I missing something? If all you need to do to get the kidney transplant is to lower the vl to 200,000 why not try to do it? You don't need to clear the hcv at that point. If the transplant works out then you can deal with hcv svr at a later date if it is needed.I believe the vl can be reduced with interferon only. Anyone correct me if I am wrong. frank
I re-read your post and it seems things are a little more complicated than at first glance.
I have no knowledge of who should have or not have a kidney transplant, so can't comment.
However, if you decide you need the transplant, then it appears you r kidney team wants to reduce your viral load to under 200,000. So it isn't really a matter if the treatment will give you an SVR but it it can get your viral count down.
Its possible that inteferon without ribavirin will temporrily get your viral count down. Don't really know. Maybe your heptologist can give you some guidance there. If it can, then it may be worth try at least for the kidney transplant. But if you want to go the whole hog, I'd still investigate lower doses of ribavirin based on your kidney function.
I have no knowledge of who should have or not have a kidney transplant, so can't comment.
However, if you decide you need the transplant, then it appears you r kidney team wants to reduce your viral load to under 200,000. So it isn't really a matter if the treatment will give you an SVR but it it can get your viral count down.
Its possible that inteferon without ribavirin will temporrily get your viral count down. Don't really know. Maybe your heptologist can give you some guidance there. If it can, then it may be worth try at least for the kidney transplant. But if you want to go the whole hog, I'd still investigate lower doses of ribavirin based on your kidney function.
I think I remember your post. Do you know what genotype you are and stage liver damage you have? If you're a geno 1 and stage 0,1 or 2, I question treating at all in your condition. But I'm not a doctor so I really recommend you get a second opinion.
As far as treating without ribavirin, the stats for clearing aren't great. Again, I question what the point of treatment is. But you really need a second opinion from a specilist.
Regarding ribavirin and those with compromised kidney functions -- as I seem to remember posting before -- the more progressive heptologists are treating with ribavirin. The trick is to come up with the correct ribavirin dose based on your kidney function. The most sophisticated work on this has been done in Sweden where they have developed a formula based on kidney function as well as special blood tests that monitor plasma ribavirin levels.
I don't believe anyone in this country other than a few research labs is monitoring plasma ribavirin levels, but I do know that some heptologists are treating those with various degrees of kidney impairment by reducing ribavirin based on kidney function.
What you need to do is find a heptologist who is experienced treating patients with impaired kidney function. Either go to him, or ask your doctor for a consult. Then, if he agrees you are a candidate, put that doctor together with your kidney team and let them try to work something out.
But again, I question entering treatment unless you have a lot of liver damage unless the docs have some other compelling reason.
As far as treating without ribavirin, the stats for clearing aren't great. Again, I question what the point of treatment is. But you really need a second opinion from a specilist.
Regarding ribavirin and those with compromised kidney functions -- as I seem to remember posting before -- the more progressive heptologists are treating with ribavirin. The trick is to come up with the correct ribavirin dose based on your kidney function. The most sophisticated work on this has been done in Sweden where they have developed a formula based on kidney function as well as special blood tests that monitor plasma ribavirin levels.
I don't believe anyone in this country other than a few research labs is monitoring plasma ribavirin levels, but I do know that some heptologists are treating those with various degrees of kidney impairment by reducing ribavirin based on kidney function.
What you need to do is find a heptologist who is experienced treating patients with impaired kidney function. Either go to him, or ask your doctor for a consult. Then, if he agrees you are a candidate, put that doctor together with your kidney team and let them try to work something out.
But again, I question entering treatment unless you have a lot of liver damage unless the docs have some other compelling reason.
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