Aa
viral load and general labs
i was recently diagnosed with HCV Stage 3, genotype 1a. my viral load is 964,112 using the HEPTIMAX HCV RNA test. i am a bit confused as the VL appears to be low. i understand that VL is not the only indication of HCV.
i also have moderate macrosteatosis , extensive bridging fibrosis, and my AST is 187, an ALT of 299 with a platelet count of 96,000.
i would like to get in a trial, but i hear that if one is a tad too far along, that it is hard to get in one. i don't really know where i am, on the severity scale....
any help would be appreciated.
i also have moderate macrosteatosis , extensive bridging fibrosis, and my AST is 187, an ALT of 299 with a platelet count of 96,000.
i would like to get in a trial, but i hear that if one is a tad too far along, that it is hard to get in one. i don't really know where i am, on the severity scale....
any help would be appreciated.
I have a few comments that I wanted to add to the thread that you may find helpful. I general I agree with the comments and good advice given but the other posters.
"i don't really know where i am, on the severity scale...."
Without getting into a debate about what your platelet count indicates, one thing is clear, you have advanced liver disease. "extensive bridging fibrosis" This lowers the chances of SVR in comparison to other who don't have such advanced liver disease. The more advanced your liver disease, the more difficult it is to achieve SVR. Your liver specialist doctor (Gastro or Hepatologist) will be able to tell you if you are stage F3 or stage F4 (cirrhosis) by looking at you biopsy report and your blood tests. There is a distinctive difference between the two stages so remember to ask him. Remember to write down all your questions and concerns so when you see the specialist you won't forget something.
Remember there is nothing you can do to change what is. The main thing to focus on is working together with your doctor to determine what is the best course of action for you at this time based on what you know.
As everyone have mentioned, Telaprevir should be coming to market in 2011 (I have heard in the Spring of 2011, but you never know when for sure) So you may want to give yourself the best odds of SVR treating with peg-int, ribavirin and Telaprevir. Boceprevir will probably come to market sometime after Telaprevir in 2011. Again consult with your specialist.
The good news is...you still have time to treat and with new treatments "just around the corner" your chances of SVR will be better then ever. Congratulate yourself for facing the issue at this time. Don't focus on beating up yourself about what "should have been". Yesterday is gone. All we have is today and hopefully many days in the future. By achieving SVR soon you will stop the progression of your liver disease and live a full and healthy life.
I wish you all the best whatever you decide.
HectorSF
"i don't really know where i am, on the severity scale...."
Without getting into a debate about what your platelet count indicates, one thing is clear, you have advanced liver disease. "extensive bridging fibrosis" This lowers the chances of SVR in comparison to other who don't have such advanced liver disease. The more advanced your liver disease, the more difficult it is to achieve SVR. Your liver specialist doctor (Gastro or Hepatologist) will be able to tell you if you are stage F3 or stage F4 (cirrhosis) by looking at you biopsy report and your blood tests. There is a distinctive difference between the two stages so remember to ask him. Remember to write down all your questions and concerns so when you see the specialist you won't forget something.
Remember there is nothing you can do to change what is. The main thing to focus on is working together with your doctor to determine what is the best course of action for you at this time based on what you know.
As everyone have mentioned, Telaprevir should be coming to market in 2011 (I have heard in the Spring of 2011, but you never know when for sure) So you may want to give yourself the best odds of SVR treating with peg-int, ribavirin and Telaprevir. Boceprevir will probably come to market sometime after Telaprevir in 2011. Again consult with your specialist.
The good news is...you still have time to treat and with new treatments "just around the corner" your chances of SVR will be better then ever. Congratulate yourself for facing the issue at this time. Don't focus on beating up yourself about what "should have been". Yesterday is gone. All we have is today and hopefully many days in the future. By achieving SVR soon you will stop the progression of your liver disease and live a full and healthy life.
I wish you all the best whatever you decide.
HectorSF
I'm with ya on the waiting bro. Diagnosed early March, can't get in to see the specialist till mid-June. I've been told over and over this is a waiting game...
At any rate, this disease is typically very, very slow moving. I know it's hard to believe, but the shock WILL WEAR OFF. It's already doing so for me.
Look at it this way - at least now you're in a position to do something about it! That single thought has made this bearable, dare I say, exciting, for me. I can't wait to see what it feels like to be cured!
Hang in there my man.
Robert
At any rate, this disease is typically very, very slow moving. I know it's hard to believe, but the shock WILL WEAR OFF. It's already doing so for me.
Look at it this way - at least now you're in a position to do something about it! That single thought has made this bearable, dare I say, exciting, for me. I can't wait to see what it feels like to be cured!
Hang in there my man.
Robert
...thank you Mr. Liver.....you are right. I have been picking apart my most recent visit with my DR, trying to connect what he told me, and possibly being at stage 4. I have been dwelling on it since i read the post. i appreciate the response i got from newleaf09, and in fact all the responses. I guess I will leave it to the DR's to diagnose me. I am waiting to see a liver specialist and it is more painful waiting than I think the treatment will be.
"You are staged at Stage 3 but that platelet count indicates to me that you are likely Stage 4."
I have seen you and others make similar comments to posters and the info you give is not accurate. If it was this simple to diagnose cirrhosis many,many exposures to biopsy risk could be eliminated. I would think if I was the poster and received a reply like yours it may ruin my day----needlessly. So, please try to be accuarate. You never know but a newbie might think those stars actually mean something. ;) In addition to this study there is a ton of info on those who naturally have a low platelet count which is <150,000 and have absolutely nothing wrong with them physiologically.
ML
Manns, McHutchison,Afdhal, et al
"Thrombocytopenia (platelet count <150,000/microL) is a common complication in patients with chronic liver disease (CLD) that has been observed in up to 76% of patients. Moderate thrombocytopenia (platelet count, 50,000/microL-75,000/microL) occurs in approximately 13% of patients with cirrhosis."
http://www.ncbi.nlm.nih.gov/pubmed/18433919
I have seen you and others make similar comments to posters and the info you give is not accurate. If it was this simple to diagnose cirrhosis many,many exposures to biopsy risk could be eliminated. I would think if I was the poster and received a reply like yours it may ruin my day----needlessly. So, please try to be accuarate. You never know but a newbie might think those stars actually mean something. ;) In addition to this study there is a ton of info on those who naturally have a low platelet count which is <150,000 and have absolutely nothing wrong with them physiologically.
ML
Manns, McHutchison,Afdhal, et al
"Thrombocytopenia (platelet count <150,000/microL) is a common complication in patients with chronic liver disease (CLD) that has been observed in up to 76% of patients. Moderate thrombocytopenia (platelet count, 50,000/microL-75,000/microL) occurs in approximately 13% of patients with cirrhosis."
http://www.ncbi.nlm.nih.gov/pubmed/18433919
thank you so much for your responses. I am going to meet with a liver specialist in a couple of weeks. my Internist wants me to see him, and possibly discuss a trial also. I want to start treatment as soon as i can; on a trial or not. i am also concerned about the low platelets too. i am starting to get some sides from the HCV, mainly upper rite side pain, purpura, hive-like itching and a bit tired sometimes. i also have allergies and asthma. I hope i'm not at stage 4. i guess we all need some hope. i also joined Janis and Freinds, and have found the people there to be very caring and helpful
I shouldn't have waited this long to treat this. i knew about it several years ago.
thank you again for your help.
I shouldn't have waited this long to treat this. i knew about it several years ago.
thank you again for your help.
Oops, sorry, I misread your VL. Around 1M is usually considered a moderate VL, not a low VL. Even the most optimistic studies rank low VL as below 600,000; most go with 400,000 as Bill said. I still think a trial run with peg/riba is a reasonable strategy, but would use it as a tool to assess response to interferon and not keep going if the response were not outstanding.
The phase 3 trials often accept cirrhotics but they have guidelines for how far out of range you can be. You are staged at Stage 3 but that platelet count indicates to me that you are likely Stage 4. I started a Boceprevir trial with 120,000 platelets at screening and do not know what their cut-off low range was. The interferon will drag platelets down further during treatment.
The protease inhibitors drag down hemoglobin and neutrophils, but there are 'rescue' drugs for those blood counts. It can be difficult for cirrhotics to clear at all on interferon/riba. A PI would offer more of a guarantee of SVR but may not be essential in your case. Your low viral load is a serious plus. It is very frequent that low VL patients clear the virus quickly, stay clear and go on to SVR. I don't know if your low VL can overrule the poor response that may go along with your liver damage. It did for me (was grade 3, stage 4 and cleared in one week on peg/riba alone). In my opinion, you do not have time to wait for the PI's to complete FDA approval next year (2011 is the proposed date). You could consider trying the peg/riba for 4 weeks and seeing if you can clear on it alone, without the PI. If you don't, you will not have suffered much (the first month is not bad except for any flu-like shot reaction, which not everyone gets). If you clear, you can go on with the peg/riba and get this behind you or if not, you will know how responsive you are and can pursue the PI. Good luck.
The protease inhibitors drag down hemoglobin and neutrophils, but there are 'rescue' drugs for those blood counts. It can be difficult for cirrhotics to clear at all on interferon/riba. A PI would offer more of a guarantee of SVR but may not be essential in your case. Your low viral load is a serious plus. It is very frequent that low VL patients clear the virus quickly, stay clear and go on to SVR. I don't know if your low VL can overrule the poor response that may go along with your liver damage. It did for me (was grade 3, stage 4 and cleared in one week on peg/riba alone). In my opinion, you do not have time to wait for the PI's to complete FDA approval next year (2011 is the proposed date). You could consider trying the peg/riba for 4 weeks and seeing if you can clear on it alone, without the PI. If you don't, you will not have suffered much (the first month is not bad except for any flu-like shot reaction, which not everyone gets). If you clear, you can go on with the peg/riba and get this behind you or if not, you will know how responsive you are and can pursue the PI. Good luck.
From the looks of things, it’s time to seriously consider treatment. Your viral load *is* low; the current cut-off that distinguishes low from high viral load is 400,000 IU/mL. Viral load isn’t necessarily indicative of disease progression, as you might already know.
Your platelets are on the low side as well; we’d like to see them a little higher, but they won’t prevent you from treating, and as long as they don’t drop drastically from the interferon, you should be okay.
Has your doctor discussed the HCV protease inhibitors with you yet? These look very promising as an adjunct to the current treatment meds, and appear to increase efficacy as well as reducing treatment time/lesson exposure to interferon in some cases.
Welcome to the discussion group, by the way—
Bill
Your platelets are on the low side as well; we’d like to see them a little higher, but they won’t prevent you from treating, and as long as they don’t drop drastically from the interferon, you should be okay.
Has your doctor discussed the HCV protease inhibitors with you yet? These look very promising as an adjunct to the current treatment meds, and appear to increase efficacy as well as reducing treatment time/lesson exposure to interferon in some cases.
Welcome to the discussion group, by the way—
Bill
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