Any symptoms from chronic HepC are usually vague. I was infected for 40+ years, but did not really have any specific symptoms. Your leg pains 'may' be due to peripheral neuropathy associated with HCV. Abdominal aches and pains are usually not related to HCV. Treatment will give side effects, but they disappear over time. Since SVR my blood sugar has normalised, but that had not caused any symptoms. The main benefit of SVR is the greatly reduced rick of HCC, the reduction in portal hypertension and the cessation of liver damage. That sure eases your mind. Cheers.
Tig said
May 31, 2014
Hi Paul,
I'd like to tell you that yes, the aggravating, years long symptoms caused by the HCV will disappear during treatment but that's not something I can offer. You may notice some improvements in some things, but it may take quite some time for all of them to disappear, if they do. I've noticed some improvements in muscle aches and pains, no further abdominal tightness or RUQ pain, but my large joints haven't improved much, perhaps some with my smaller joints, hands, and feet. Unfortunately I'm having some worsening of hip joint pain and that's clearly a result of the Interferon. I'm having to follow up now with an IM specialist and orthopedic doctor to address the increased discomfort in my hips and knees. Interferon is well known for this and I'm going to work through it, and hoping that time will reduce those problems. But I've noticed huge improvements in motivation, overall feeling of wellness and my outlook for the future is much improved.
Tig
Paul B said
May 31, 2014
Thanks for the replies everyone, I am feeling encouraged already , particularly regarding the lowering of the fibrosis score after treatment !!
During the years with hep C I have endured varying symptoms that have at times been debilitating. Early on, around 1994, before I knew I had the virus, my legs would ache beyond belief, 24/7 with no relief. So I used to knock back 1/2 a dozen beers to get some relief. Little did I know that all that was doing was exacerbating the problem. The leg pain settled down eventually though my legs have never felt pain free. Except for brief moments, small windows of minutes.
These days my legs are nowhere near as bad but I have pain in my side quite a bit. Then there is general abdominal discomfort...
So here is the question. Assuming that the virus is cleared during treatment (not suggesting cured here just viral response to the drugs during the programme), would it be logical to assume that the symptoms associated with the Hep C virus would disappear ? Essentially then I would have the side effects of the drugs, but not the Hep c symptoms. That would make it easier to deal with.
-- Edited by Paul B on Sunday 1st of June 2014 01:53:52 AM
OldenSlow said
May 31, 2014
Paul B wrote:
... The issue that bothers me the most is that I am a cyclist, and usually ride around 300 + kms per week at hard pace. Kissing that goodbye for a year will take me back to square one. At 57, I don't know if I will be motivated to start all over.
Hi Paul and welcome to the forum. Long time distance runner, here. I've had this same discussion with myself more than once. '94 injury (missed two years), '98 re-injury (missed a year), '04 injury/surgery (missed two years), and occasional extended downtime since. When I'd get healthy enough to get going again I used to tell myself, "Ok. A complete re-start. I'm gonna do this, but it's the last time I'll put myself through it." Yeah, right! I no longer even doubt that I'll be climbing back on the proverbial horse. It's in my blood.
If you're cycling 300 km/wk, I suspect it's in your blood too. It will be a primary motivator in helping you through treatment. Hang onto it. You'll be back. No doubt.
wayne
Scruffy said
May 31, 2014
Hiya Paul
I just finished 48 weeks the only difference is that it was the Telaprivir third drug. I stayed fairly active considering my anemia was pretty bad. Three transfusions and weekly procrit shots for 40 of the 48 weeks. If you go anemic you have to cut back on the bike for a while. If you enjoy it you'll go back even if you have to start over with your speed and stamina. I bet it will be a piece of cake to do without hep c. IMO it would be worth it to clear the virus. On another hep c site I saw 3 ppl starting the old triple treatment this month. Looks like it will be around for a while longer.
Good luck with your treatment!
mallani said
May 31, 2014
Hi Paul,
Welcome from another Aussie. I'm in Brisbane. I did the 48 weeks of the Victrelis (Boceprevir) triple starting in March 2012. I'm lucky to have obtained SVR.
Pre-treatment, I had a Fibroscan score of 30.1. One year post-treatment, it had dropped to 8.8 kPa, so fibrosis does regress.
The Victrelis triple knocked me around, mostly from the anaemia. It took a year to recover from all the Interferon effects.
As a cirrhotic, you really can't afford to wait for Sovaldi. There are no more Trials that I know of. The Victrelis triple is doable, and the results are good, particularly if you get an RVR. That's Undetected after 4 weeks of Victrelis (8 weeks total). Sorry about the cycling- although everyone is different, you'll probably have significant anaemia. I did a lot of posts during treatment, so you can have a look and see what you're in for. Cheers mate.
JoAnneh said
May 30, 2014
Paul,
The once a week Interferon was much easier
than the 3 times a week!
Either way has struggles but once weekly
Helps compared to thrice.
This forum was great support
For me and it's a blessing to share
The experience with others.
It was my life line as well as growing
Closer to The Lord.
I beat Hep C. The medicine has huge success
Rates.
Best wishes! Glad you are getting closer
To being Hep C free.
Tig said
May 30, 2014
Paul,
With a fibroscan score of 17, I would agree that cirrhosis is indicated. However, the basic ultrasound doesn't provide an accurate representation of cirrhosis, it will show masses and size but not any degree of accuracy where fibrosis is concerned. Even though the fibroscan utilizes ultrasound technology, it uses a different probe and measures an ultrasound pulse, vs a scan that is used for a diagnostic ultrasound.
Tig
Paul B said
May 30, 2014
Hey Tig
great news on you SVR, well deserved after what must have been a tough time.
Just had my blood done, results when I have my next appointment (10 June). So I will have the numbers then.
My fibroscan score was 17 (2 weeks ago)... however, this is in conflict with an ultrasound from a year ago which indicated that my liver is normal... confusing. The blood test at that time indicated ALT at 48 which is way down on what it used to read (typically 150 - 300) So yea, doc said cirrhosis.
No chance of new treatment here for a long time yet unfortunately.
Tig said
May 30, 2014
Hi Paul,
If you notice at the bottom of my post, many of us post a brief history of our past and present treatment information. You can add that by utilizing the signature function in your profile section. I just took a viral load test 21 weeks after treatment ended and got the official notice that I've achieved SVR and that's considered a cure now. The chance of relapse after EOT +12 (weeks) is less than 1% and that was confirmed at week 21. Generally they will test you at EOT +12 and 24. Provided you remain undetectable on both tests, they give you the all clear and add those three sweet letters to your name SVR, or Sustained Virologic Response.
I don't know what to tell you about your cycling. It's not going to be easy for you to continue, especially considering you'll be doing a 48 week course. That's a difficult course of treatment, even under the best of circumstances. I'm curious, can you tell me a little bit more about your liver health? When did you have your last biopsy or fibroscan? Generally 48 week treatments are indicated for cirrhotics. Do you have cirrhosis? Any information, ALT/AST, etc. are quite helpful when replying to your questions. Anyway, back to your cycling, you're going to experience some anemia and your strength isn't going to be what you're used to. Your hemoglobin will fall and the oxygen carrying capabilities will diminish greatly and you're going to be extremely tired as a result. It's good to maintain some form of physical exercise to avoid extreme muscle wasting, but I would be cautious when demanding the kind of strength power cycling demands. We've got a new member here that is an extreme cyclist in Hawaii, her name here is "Turnsit" and she'll be able to provide some tips and advice. But she's not on the same protocol.
Are there any opportunities to get started on a study with any of the new medications in your area? Mallani may be able to provide you with some advice in that respect. I know that it will be quite some time before Sovaldi is available in Australia, and if your fibrosis is advanced, it's best to get a treatment program started to prevent any further progression.
Tig
Paul B said
May 30, 2014
Hi Tig and thanks for the reply. I did not know about the new system for injecting the drug. Sounds a lot better than the old method !
I have been informed that my treatment will be of 48 weeks duration. The issue that bothers me the most is that I am a cyclist, and usually ride around 300 + kms per week at hard pace. Kissing that goodbye for a year will take me back to square one. At 57, I don't know if I will be motivated to start all over. Having said that, I am hoping that I will be able to continue to ride though at a much reduced level of intensity and distance. At the end of the day, anything would be worth getting rid of this virus.
Where are you at after the 28 weeks ?
-- Edited by Paul B on Saturday 31st of May 2014 03:15:56 AM
Tig said
May 30, 2014
Hi Paul,
Welcome to the forum! I'm glad you've found us. I just completed 28 weeks of treatment, taking the identical medications you will be starting. I also was on similar treatments back in 96, similar again to what you went through with the same results. The drugs you will be starting can be tough on you mentally and physically, but the sfx are tolerable and there are ways to combat those issues. We'll be happy to provide pointers as you go forward. We have a member, Mallani, that is also from Australia and was successful with Victrelis too. He went through a 48 week regimen before achieving SVR. He'll chime in as soon as he see's your post.
The new Peg Interferon is a once weekly injection, using an auto injector pen. It's far easier to administer than the old 3X per week method! After you start a 4 week lead in with Peg and Riba, you'll start the Victrelis. The biggest issue with the treatment you'll be on is the anemia. But it will be monitored by frequent blood testing and any anemia can be addressed if and when it happens. You'll notice improvements in your ALT/AST as you move forward with treatment and often you'll witness fairly quick action in that regard. But as with anything, those levels will rise and fall during treatment, and won't be until after treatment ends that you'll begin to see things maintain a predictable (desired) level. It doesn't happen overnight and you'll see most of us post our blood test results as we get them. That helps us provide the best opinions should you have any questions regarding side effects or actual test results. Good luck and please ask any questions that might come to mind and I'd like to point out our search function at the top center of the page. It's full of good information. Talk to you soon!
Tig
Paul B said
May 30, 2014
Hi, this is my first post here and I have a few questions around treatment.
I am genotype 1a and have been treated twice before. First time in 1995 with straight interferon. Second time in 1998 with interferon (This was before peg interferon) and Ribaviron.
On this second occasion my ALT dropped to the normal range but by week 10 had risen again. As far as viral load readings go, other than ALT etc I have no clue, perhaps they did not discuss those readings back then.
So here in Australia we have yet to get access to the latest treatment and are currently stuck with Interferon, Ribaviron and Boceprivir (my Doc has ruled Telaprivir out). My treatment commences in about 2 weeks.
I can't recall exactly, but in 1998 I was injecting either every day or three times a week. In 1995 it was three times a week. The side effects made life pretty tough as I recall and I am wondering if it will be as bad this time around. I had been told that the latest Interferon is more tolerable, plus, I will be injecting it only once per week. But then, at week 4, Boceprevir is added...
In researching the subject online, it would appear that the normalising of my ALT last time around may be a positive indicator for this new attempt to clear the virus. Any opinions on this ?
Hi Paul,
Any symptoms from chronic HepC are usually vague. I was infected for 40+ years, but did not really have any specific symptoms. Your leg pains 'may' be due to peripheral neuropathy associated with HCV. Abdominal aches and pains are usually not related to HCV. Treatment will give side effects, but they disappear over time. Since SVR my blood sugar has normalised, but that had not caused any symptoms. The main benefit of SVR is the greatly reduced rick of HCC, the reduction in portal hypertension and the cessation of liver damage. That sure eases your mind. Cheers.
Hi Paul,
I'd like to tell you that yes, the aggravating, years long symptoms caused by the HCV will disappear during treatment but that's not something I can offer. You may notice some improvements in some things, but it may take quite some time for all of them to disappear, if they do. I've noticed some improvements in muscle aches and pains, no further abdominal tightness or RUQ pain, but my large joints haven't improved much, perhaps some with my smaller joints, hands, and feet. Unfortunately I'm having some worsening of hip joint pain and that's clearly a result of the Interferon. I'm having to follow up now with an IM specialist and orthopedic doctor to address the increased discomfort in my hips and knees. Interferon is well known for this and I'm going to work through it, and hoping that time will reduce those problems. But I've noticed huge improvements in motivation, overall feeling of wellness and my outlook for the future is much improved.
Tig
Thanks for the replies everyone, I am feeling encouraged already
, particularly regarding the lowering of the fibrosis score after treatment !!
During the years with hep C I have endured varying symptoms that have at times been debilitating. Early on, around 1994, before I knew I had the virus, my legs would ache beyond belief, 24/7 with no relief. So I used to knock back 1/2 a dozen beers to get some relief. Little did I know that all that was doing was exacerbating the problem. The leg pain settled down eventually though my legs have never felt pain free. Except for brief moments, small windows of minutes.
These days my legs are nowhere near as bad but I have pain in my side quite a bit. Then there is general abdominal discomfort...
So here is the question. Assuming that the virus is cleared during treatment (not suggesting cured here just viral response to the drugs during the programme), would it be logical to assume that the symptoms associated with the Hep C virus would disappear ? Essentially then I would have the side effects of the drugs, but not the Hep c symptoms. That would make it easier to deal with.
-- Edited by Paul B on Sunday 1st of June 2014 01:53:52 AM
Hi Paul and welcome to the forum. Long time distance runner, here. I've had this same discussion with myself more than once. '94 injury (missed two years), '98 re-injury (missed a year), '04 injury/surgery (missed two years), and occasional extended downtime since. When I'd get healthy enough to get going again I used to tell myself, "Ok. A complete re-start. I'm gonna do this, but it's the last time I'll put myself through it." Yeah, right! I no longer even doubt that I'll be climbing back on the proverbial horse. It's in my blood.
If you're cycling 300 km/wk, I suspect it's in your blood too. It will be a primary motivator in helping you through treatment. Hang onto it. You'll be back. No doubt.
wayne
Hiya Paul
I just finished 48 weeks the only difference is that it was the Telaprivir third drug. I stayed fairly active considering my anemia was pretty bad. Three transfusions and weekly procrit shots for 40 of the 48 weeks. If you go anemic you have to cut back on the bike for a while. If you enjoy it you'll go back even if you have to start over with your speed and stamina. I bet it will be a piece of cake to do without hep c. IMO it would be worth it to clear the virus. On another hep c site I saw 3 ppl starting the old triple treatment this month. Looks like it will be around for a while longer.
Good luck with your treatment!
Hi Paul,
Welcome from another Aussie. I'm in Brisbane. I did the 48 weeks of the Victrelis (Boceprevir) triple starting in March 2012. I'm lucky to have obtained SVR.
Pre-treatment, I had a Fibroscan score of 30.1. One year post-treatment, it had dropped to 8.8 kPa, so fibrosis does regress.
The Victrelis triple knocked me around, mostly from the anaemia. It took a year to recover from all the Interferon effects.
As a cirrhotic, you really can't afford to wait for Sovaldi. There are no more Trials that I know of. The Victrelis triple is doable, and the results are good, particularly if you get an RVR. That's Undetected after 4 weeks of Victrelis (8 weeks total). Sorry about the cycling- although everyone is different, you'll probably have significant anaemia. I did a lot of posts during treatment, so you can have a look and see what you're in for. Cheers mate.
The once a week Interferon was much easier
than the 3 times a week!
Either way has struggles but once weekly
Helps compared to thrice.
This forum was great support
For me and it's a blessing to share
The experience with others.
It was my life line as well as growing
Closer to The Lord.
I beat Hep C. The medicine has huge success
Rates.
Best wishes! Glad you are getting closer
To being Hep C free.
Paul,
With a fibroscan score of 17, I would agree that cirrhosis is indicated. However, the basic ultrasound doesn't provide an accurate representation of cirrhosis, it will show masses and size but not any degree of accuracy where fibrosis is concerned. Even though the fibroscan utilizes ultrasound technology, it uses a different probe and measures an ultrasound pulse, vs a scan that is used for a diagnostic ultrasound.
Tig
Hey Tig
great news on you SVR, well deserved after what must have been a tough time.
Just had my blood done, results when I have my next appointment (10 June). So I will have the numbers then.
My fibroscan score was 17 (2 weeks ago)... however, this is in conflict with an ultrasound from a year ago which indicated that my liver is normal... confusing. The blood test at that time indicated ALT at 48 which is way down on what it used to read (typically 150 - 300) So yea, doc said cirrhosis.
No chance of new treatment here for a long time yet unfortunately.
Hi Paul,
If you notice at the bottom of my post, many of us post a brief history of our past and present treatment information. You can add that by utilizing the signature function in your profile section. I just took a viral load test 21 weeks after treatment ended and got the official notice that I've achieved SVR and that's considered a cure now. The chance of relapse after EOT +12 (weeks) is less than 1% and that was confirmed at week 21. Generally they will test you at EOT +12 and 24. Provided you remain undetectable on both tests, they give you the all clear and add those three sweet letters to your name SVR, or Sustained Virologic Response.
I don't know what to tell you about your cycling. It's not going to be easy for you to continue, especially considering you'll be doing a 48 week course. That's a difficult course of treatment, even under the best of circumstances. I'm curious, can you tell me a little bit more about your liver health? When did you have your last biopsy or fibroscan? Generally 48 week treatments are indicated for cirrhotics. Do you have cirrhosis? Any information, ALT/AST, etc. are quite helpful when replying to your questions. Anyway, back to your cycling, you're going to experience some anemia and your strength isn't going to be what you're used to. Your hemoglobin will fall and the oxygen carrying capabilities will diminish greatly and you're going to be extremely tired as a result. It's good to maintain some form of physical exercise to avoid extreme muscle wasting, but I would be cautious when demanding the kind of strength power cycling demands. We've got a new member here that is an extreme cyclist in Hawaii, her name here is "Turnsit" and she'll be able to provide some tips and advice. But she's not on the same protocol.
Are there any opportunities to get started on a study with any of the new medications in your area? Mallani may be able to provide you with some advice in that respect. I know that it will be quite some time before Sovaldi is available in Australia, and if your fibrosis is advanced, it's best to get a treatment program started to prevent any further progression.
Tig
Hi Tig and thanks for the reply. I did not know about the new system for injecting the drug. Sounds a lot better than the old method !
I have been informed that my treatment will be of 48 weeks duration. The issue that bothers me the most is that I am a cyclist, and usually ride around 300 + kms per week at hard pace. Kissing that goodbye for a year will take me back to square one. At 57, I don't know if I will be motivated to start all over. Having said that, I am hoping that I will be able to continue to ride though at a much reduced level of intensity and distance. At the end of the day, anything would be worth getting rid of this virus.
Where are you at after the 28 weeks ?
-- Edited by Paul B on Saturday 31st of May 2014 03:15:56 AM
Hi Paul,
Welcome to the forum! I'm glad you've found us. I just completed 28 weeks of treatment, taking the identical medications you will be starting. I also was on similar treatments back in 96, similar again to what you went through with the same results. The drugs you will be starting can be tough on you mentally and physically, but the sfx are tolerable and there are ways to combat those issues. We'll be happy to provide pointers as you go forward. We have a member, Mallani, that is also from Australia and was successful with Victrelis too. He went through a 48 week regimen before achieving SVR. He'll chime in as soon as he see's your post.
The new Peg Interferon is a once weekly injection, using an auto injector pen. It's far easier to administer than the old 3X per week method! After you start a 4 week lead in with Peg and Riba, you'll start the Victrelis. The biggest issue with the treatment you'll be on is the anemia. But it will be monitored by frequent blood testing and any anemia can be addressed if and when it happens. You'll notice improvements in your ALT/AST as you move forward with treatment and often you'll witness fairly quick action in that regard. But as with anything, those levels will rise and fall during treatment, and won't be until after treatment ends that you'll begin to see things maintain a predictable (desired) level. It doesn't happen overnight and you'll see most of us post our blood test results as we get them. That helps us provide the best opinions should you have any questions regarding side effects or actual test results. Good luck and please ask any questions that might come to mind and I'd like to point out our search function at the top center of the page. It's full of good information. Talk to you soon!
Tig
Hi, this is my first post here and I have a few questions around treatment.
I am genotype 1a and have been treated twice before. First time in 1995 with straight interferon. Second time in 1998 with interferon (This was before peg interferon) and Ribaviron.
On this second occasion my ALT dropped to the normal range but by week 10 had risen again. As far as viral load readings go, other than ALT etc I have no clue, perhaps they did not discuss those readings back then.
So here in Australia we have yet to get access to the latest treatment and are currently stuck with Interferon, Ribaviron and Boceprivir (my Doc has ruled Telaprivir out). My treatment commences in about 2 weeks.
I can't recall exactly, but in 1998 I was injecting either every day or three times a week. In 1995 it was three times a week. The side effects made life pretty tough as I recall and I am wondering if it will be as bad this time around. I had been told that the latest Interferon is more tolerable, plus, I will be injecting it only once per week. But then, at week 4, Boceprevir is added...
In researching the subject online, it would appear that the normalising of my ALT last time around may be a positive indicator for this new attempt to clear the virus. Any opinions on this ?
Cheers
Paul