Aa
to get to72 w,or just 48
Hi everyone,
I am 53 y old with hep c(from transfusion 25 years ago).All my blood works are all the time very good.I am stage 1-2 fibrosis,inflamation 0-1,but since 2009 I have cryoglobulins positive.
I started SOC 15 weeks ago with a viral load 822,000.At w 4 it was 3430 and at week 12 it was38 but(not UND).My hepatologist wants me to go to 72 weeks(till March 2012),but I thinks that in max.9 months Telaprevir will be in use (and Boce).Then I think to do 48 weeks and if the virus came back I will take 24 weeks with Pegasys,Riba ,Telaprevir or Boceprevir .I know it is a harder treatment than SOC.What do you people with more experience than me think?
I am not happy at all.Before starting the treatment I was so afraid about it ,that I started a SSRI and my hair gones every day.
Thank you very much for every answer..
I am 53 y old with hep c(from transfusion 25 years ago).All my blood works are all the time very good.I am stage 1-2 fibrosis,inflamation 0-1,but since 2009 I have cryoglobulins positive.
I started SOC 15 weeks ago with a viral load 822,000.At w 4 it was 3430 and at week 12 it was38 but(not UND).My hepatologist wants me to go to 72 weeks(till March 2012),but I thinks that in max.9 months Telaprevir will be in use (and Boce).Then I think to do 48 weeks and if the virus came back I will take 24 weeks with Pegasys,Riba ,Telaprevir or Boceprevir .I know it is a harder treatment than SOC.What do you people with more experience than me think?
I am not happy at all.Before starting the treatment I was so afraid about it ,that I started a SSRI and my hair gones every day.
Thank you very much for every answer..
"I want to know to if Tela and Boce can be just at the beging of the treatment or I can add it on lest weeks of treatment .I am geno1b,and after 4 weeks I was very optimist.The virus load lowered by 250%,and I hoped at week 12 it will e UND.Itake very hard this time ,just because I don't know what serious side effects will be in the future"
I think the best time is at the beginning for these new drugs because they are good at quickly getting a person to undetectable and then of course the longer you are undetectable during treatment the more likely you have a chance of success.
Perhaps Willing, the other forum member who is planning on adding telaprevir or boceprevir later in treatment will comment at some point. I think if a person has more advanced liver damage or something like cryo they have more of a sense of urgency to treat now. Perhaps adding the new drug to the mix later will increase there chance of svr and destroy those last remaining virons that may be in your liver or body somewhere hard to reach but are not detectable by blood tests.
- Dave
I think the best time is at the beginning for these new drugs because they are good at quickly getting a person to undetectable and then of course the longer you are undetectable during treatment the more likely you have a chance of success.
Perhaps Willing, the other forum member who is planning on adding telaprevir or boceprevir later in treatment will comment at some point. I think if a person has more advanced liver damage or something like cryo they have more of a sense of urgency to treat now. Perhaps adding the new drug to the mix later will increase there chance of svr and destroy those last remaining virons that may be in your liver or body somewhere hard to reach but are not detectable by blood tests.
- Dave
I appreciate your comment about being sorry...however my feeling is we all go into tx. knowing that there is a chance especially with Geno 1(which I have) that the results might be less than stellar. This IS my first tx. and my baseline (vl) was 9.7 mill and at wk.12 was 284. A huge 4.5 log drop.however still DET. I am currently in a study trial and meeting with them in the next little while to further discuss my situation. I will then make a decision on what I will do.
If it would be helpful to you go to my profile and pull up my post from about a week ago titled " wk12 study lab results" and maybe read over some of the comments and opinions I recv.from some of the good folks here.
Again...all the best to you
WILL
If it would be helpful to you go to my profile and pull up my post from about a week ago titled " wk12 study lab results" and maybe read over some of the comments and opinions I recv.from some of the good folks here.
Again...all the best to you
WILL
To Will
I am sorry for you.What genotype are you?Is it your firt treatment?What was your viral load?What your hepatologist said you?
Good luck
Carmencita
I am sorry for you.What genotype are you?Is it your firt treatment?What was your viral load?What your hepatologist said you?
Good luck
Carmencita
To Bill,
I take Lexapro(Cipralex) 10mg as antidepressant(a SSRI) prophylaxis and I think the clonos is from this.My cytopenia is not so bad till now,but I don't know how I will be after 24-48-72 weeks.
Carmencita
I take Lexapro(Cipralex) 10mg as antidepressant(a SSRI) prophylaxis and I think the clonos is from this.My cytopenia is not so bad till now,but I don't know how I will be after 24-48-72 weeks.
Carmencita
Are you aggressively managing side effects? Cytopenia can sometimes be successfully managed with epoetin, filgrastim, etc. Are you in a position to access these drugs should they be required?
You are taking antidepressant prophylaxis?
I think autoimmune issues probably pose the most frequent long-term complications; irreversible autoimmune thyroiditis is a real but very infrequent problem. I’m personally unaware of muscle twitching/clonus associated with HCV therapy; but of course I’m not a medical professional.
It’s not unusual to feel overwhelmed now; hopefully you have a physician overseeing your care to offer objective perspective?
Bueno suerte, Carmencito--
Bill
You are taking antidepressant prophylaxis?
I think autoimmune issues probably pose the most frequent long-term complications; irreversible autoimmune thyroiditis is a real but very infrequent problem. I’m personally unaware of muscle twitching/clonus associated with HCV therapy; but of course I’m not a medical professional.
It’s not unusual to feel overwhelmed now; hopefully you have a physician overseeing your care to offer objective perspective?
Bueno suerte, Carmencito--
Bill
I want to know to if Tela and Boce can be just at the beging of the treatment or I can add it on lest weeks of treatment .I am geno1b,and after 4 weeks I was very optimist.The virus load lowered by 250%,and I hoped at week 12 it will e UND.Itake very hard this time ,just because I don't know what serious side effects will be in the future
I can"t really be of much help with trying to answer your question about what is the best decision for you personally,other than just to say I am somewhat right now in the same boat as far as still being DET. at wk12. Their are also a few other members currently in this position and wrestling with what s best to do at this point.
I am also just starting wk.15 and will be making that tough decision in the very near future .The sites that Bill has posted are two of the ones that state the cold hard facts by trial and study,and then in my opinion you need to consult with your Hepa(hopefully he/she has some experience with cases like yours) and then make the decision that seems right for you.
Sorry I can"t give you a more concrete answer on what is the best thing to do...just letting you know you aren"t alone at this juncture and result of tx.
Good luck
WILL
I am also just starting wk.15 and will be making that tough decision in the very near future .The sites that Bill has posted are two of the ones that state the cold hard facts by trial and study,and then in my opinion you need to consult with your Hepa(hopefully he/she has some experience with cases like yours) and then make the decision that seems right for you.
Sorry I can"t give you a more concrete answer on what is the best thing to do...just letting you know you aren"t alone at this juncture and result of tx.
Good luck
WILL
Hi,
You are right.I treat because of cryo.It is less than2-3%,but I had once some little petaches.I am geno1b.I think the tratment with Tela is 12 weeks plus other 12 week interferon and riba.
Thak you for your encouragement
Best wish,
Carmancita
You are right.I treat because of cryo.It is less than2-3%,but I had once some little petaches.I am geno1b.I think the tratment with Tela is 12 weeks plus other 12 week interferon and riba.
Thak you for your encouragement
Best wish,
Carmancita
To Bill,
Thank you very much.You are right about the experience with interferon and riba.We can not know for sure what will be and when will be the new treatment.I am genotype 1b and I don't know if Telaprevir or Boceprevir could be add to SOC on week 48 and continue for 12 weeks with triple treatment or Tela and Boce have to be just in the first weeks of treatment.
I took very hard the news I have to do 72 week.I fell like I am a prisoner and I count every day and when I fee not good,I am afraid that everything is from SOC and maybe it is something irreversible or serious.For 5 days I feel sometime a little clonus(mioclonie)on left elbow fold and I don't know if it is from interferon or fromSSRI.It is a twitch what I can see when I fold the elbow.I am a family physician but it just make me more worried about everything.
Thank you very much.You are right about the experience with interferon and riba.We can not know for sure what will be and when will be the new treatment.I am genotype 1b and I don't know if Telaprevir or Boceprevir could be add to SOC on week 48 and continue for 12 weeks with triple treatment or Tela and Boce have to be just in the first weeks of treatment.
I took very hard the news I have to do 72 week.I fell like I am a prisoner and I count every day and when I fee not good,I am afraid that everything is from SOC and maybe it is something irreversible or serious.For 5 days I feel sometime a little clonus(mioclonie)on left elbow fold and I don't know if it is from interferon or fromSSRI.It is a twitch what I can see when I fold the elbow.I am a family physician but it just make me more worried about everything.
The following studies explore treatment extension for patients in your situation, Carmencita:
http://www.natap.org/2004/EASL/easl_06.htm
http://www.ncbi.nlm.nih.gov/pubmed/16618403?dopt=Abstract
It is always a difficult decision and can involve many factors including stage of fibrosis, personal finance and support, employment, etc.
You’re a family physician? how would you advise one of your patients in this matter?
On a personal note, I treated for 56 weeks, relapsed then an addtional 96 weeks. I had significant fibrosis (stage F3-4), and was motivated to rid myself of the virus.
Alpha interferons and ribavirin have been used extensively for nearly twenty years to manage HCV; we have years of post marketing data regarding adverse events, side effects, etc. The protease/polymerase inhibitors are new with virtually no post market safety profiles available; this needs to be considered in the equation as well, I believe.
Although protocols for the new drugs haven’t been determined, it’s likely that treatment experienced patients will minimally require 48 weeks when they are included.
Good luck with your decision—
Bill
http://www.natap.org/2004/EASL/easl_06.htm
http://www.ncbi.nlm.nih.gov/pubmed/16618403?dopt=Abstract
It is always a difficult decision and can involve many factors including stage of fibrosis, personal finance and support, employment, etc.
You’re a family physician? how would you advise one of your patients in this matter?
On a personal note, I treated for 56 weeks, relapsed then an addtional 96 weeks. I had significant fibrosis (stage F3-4), and was motivated to rid myself of the virus.
Alpha interferons and ribavirin have been used extensively for nearly twenty years to manage HCV; we have years of post marketing data regarding adverse events, side effects, etc. The protease/polymerase inhibitors are new with virtually no post market safety profiles available; this needs to be considered in the equation as well, I believe.
Although protocols for the new drugs haven’t been determined, it’s likely that treatment experienced patients will minimally require 48 weeks when they are included.
Good luck with your decision—
Bill
Hi-
I am sorry for the tough situation you are facing. I know it's very difficult to hear about extending treatment, but I think your doctor is advising you correctly. You are so close to und, but at the same time at week 15 the data does show that normally on soc you should extend to 72 weeks.
My guess is that your doctor wants you to continue treating now rather then wait and retreat later with triple therapy because of the cryoglobulinemia. If you did not have the cryo I believe he would advise you to retreat when the new drugs are available. What percentage of cryoglobulins do you have in your blood? Do you have vasculitis or neuropathy from the cryo or any other cryo symptoms?
If people are not successful with prior treatment then I believe the recommended treatment period is 48 weeks with the interferon, riba, boceprevir or telaprevir. I know this is the case for boceprevir but not sure about telaprevir.
One of the most well informed members on the forum is also retreating with soc and is probably around treatment week 10 or so. He plans on treating until tela or boce come out and then adding it to the soc. I am not sure how long he plans tx with the new drugs for. I would imagine at least 12 weeks of telaprevir and I am not sure how long he would use boceprevir if that was his choice.
As you know treating is not a fun experience at best for most people, for. At the same time I hope you give yourself the best chance by treating as long as necessary to eradicate the hcv and hopefully the cryo with it.
Hang in there, I know how difficult it can be.
Take care of yourself,
-Dave
I am sorry for the tough situation you are facing. I know it's very difficult to hear about extending treatment, but I think your doctor is advising you correctly. You are so close to und, but at the same time at week 15 the data does show that normally on soc you should extend to 72 weeks.
My guess is that your doctor wants you to continue treating now rather then wait and retreat later with triple therapy because of the cryoglobulinemia. If you did not have the cryo I believe he would advise you to retreat when the new drugs are available. What percentage of cryoglobulins do you have in your blood? Do you have vasculitis or neuropathy from the cryo or any other cryo symptoms?
If people are not successful with prior treatment then I believe the recommended treatment period is 48 weeks with the interferon, riba, boceprevir or telaprevir. I know this is the case for boceprevir but not sure about telaprevir.
One of the most well informed members on the forum is also retreating with soc and is probably around treatment week 10 or so. He plans on treating until tela or boce come out and then adding it to the soc. I am not sure how long he plans tx with the new drugs for. I would imagine at least 12 weeks of telaprevir and I am not sure how long he would use boceprevir if that was his choice.
As you know treating is not a fun experience at best for most people, for. At the same time I hope you give yourself the best chance by treating as long as necessary to eradicate the hcv and hopefully the cryo with it.
Hang in there, I know how difficult it can be.
Take care of yourself,
-Dave
Im not that experienced but my first thought with the new drugs so close, I might stop and start over with the new drugs in 5-6 months. If your next blood test came back undetected, would you be a slow responder and still have to go 72 weeks. which would bring you to 52 weeks verses 24 to 48 with PL? Then you might just keep going at that point. When would your next blood test be? If you are still detectable they would probably stop treatment. If you are on SOC when the new drugs come out can they add the PL then for a time or does it have to be a lead in thing with the PL? I would want to take the geno=typing blood test. That might tip me over the edge if I knew my chances were low in response to interferon.
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