Aa
starting treatment.
I'm staring treatment Tuesday. I'm not sure what medicine Im sure it will be interferion and something else. My question is does the side effects of the meds stat as soon as you start or does it take a little while
"P.S by the way, have you seen all the SVR reports lately? That should be very positive news for everyone."
I have seen a number of reports of SVR, and it is positive for this who get it, assuming they haven't traded one problem for another. I have also seen a number of reports of lost souls / psyche / cognitive abilities, terrible skin reactions, rapid life-theratening progression of liver disease and other bad side effects, not to mention the routine arthralgia / myalgia complaints. I actually think they've been near a 50-50 or perhaps 60-40 split over the past few weeks.
----------------------------------------------------------------------------------------------------------
"By far, the majority are happy to rid themselves of HCV and feel better than before trt. Most don't have lasting side effects other than the side effect of ridding this ugly virus from their body forever. It certainly beats the alternative."
1) Side Effects - most people probably do have subclinical side effects that they either do not notice (ie - slight flattening of psyche and shaving a point or two off of mental acuity) or do not attribute to INF combo therapy (ie - arthritic symptoms commencing and developing 2 months to one year post-end of treatment).
2) Beats the alternative -- Wait now, what is the alternative? Certain death from liver cancer or liver failure? That seems to be what you suggest.
In at least 19 out of 20 cases, the alternative is living your natural life span and dying from some cause other than Hep C. Those 1 in 20 who might die from Hep C will in all likelihood do it in their 6th or 7th decade of life. A young person contracting serious side effects from INF combo therapy will have problems commencing their 3rd or 4th decade of life. A young 20-somewthing man just posted last week about his severe, life-threatening INF-induced liver problems.
Look, I agree that odds are INF won't totally whack you out.
I would ask you to agree, however, that odds are that Hep C won't kill one, or ever cause any significant health problems in one's life, either, other than those one might create in their own mind from unwarranted fear.
The odds also are about 19 in 20 that if you treated and obtained SVR, it mattered not one whit to benefitting your life expectancy. Yo may equate it with "saving your life" but the hard numbers say that is not the fact. What it did was alleviate fear, fear that is understandable to some extent but also that is encouraged by marketing and advertising.
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf
“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.
http://www.nytimes.com/2010/07/22/business/22hepatitis.html
And you must also agree that INF-combo therapy can also speed death and / or ruin life. That's a fact acknowledged even by the drug manufacturers.
_____________________________________________________________
"PS - An ever increasing number of physicians are starting to question the wisdom and benefit of INF combo therapy."
If that is true then why are we not hearing about it???
Perhaps finger sin your ears?
I hear it from GPs and Family docs in my ocal area, I read it in and from expert Dusheiko himself in a very recent article on triple combo therapy, to wit:
"Patients should understand the inability to accurately predict disease progression, likelihood of response, the regimens, the side effects and the risks and benefits of treatment, and should be cognisant of treatments that are coming down the line or are given this information. Physicians could consider it rational to give treatment to those with progressive disease but to avoid unnecessary or potentially detri- mental treatment. The regimen is not free from the disadvantages of IFN. In giving advice, physicians should clarify the key determinants of response, the likelihood of response (in naïve and prior non-responders), the need for treatment, side effects and safety. Patients with mild disease do not necessarily require immedi- ate treatment, but treatment should not be denied to patients with early stages of disease as those with minimal necroin- flammatory changes and minimal fibrosis are candidates for treatment and have a higher likelihood of response.
Patients with compensated cirrhosis are candidates for treatment; IFNα is difficult to apply in decompensated cirrho- sis and may precipitate deterioration. Compensated cirrhosis without portal hypertension differs markedly from a later stage of cirrhosis characterised by evidence of portal hypertension and thrombocyto- penia or cirrhosis with hepatic decompen- sation.53 54 Physicians must be able to judge the stage of disease and to manage the poor tolerability of triple combination therapy and potential complications of prolonged IFN treatment in patients with advanced cirrhosis.
Psychiatric or other comorbidities may be worsened with IFN treatment so these conditions should be stabilised.55 For prior non-responders and patients with cirrhosis, it may be necessary to take into account the nature of the prior response, the IL28b subtype and HCV subtype if deferring treatment for those unlikely to respond is considered.
For experienced patients, the data to indicate improved SVR rates in patients with first-generation PIs should provide the motivation. However, response rates are suboptimal in prior null responders with cirrhosis and are <10% for previous null responders with cirrhosis and HCV genotype 1a infection. Ultimately, what drives a patient averse to IFN to be treated with telaprevir or boceprevir and PEG-IFN
and RBV? What motivates a patient already treated with IFN to want to do it again with a first-generation PI regimen? What role does the physician have in influ- encing these choices? There are no easy answers. The uniqueness of the HCV treatment decision process has recently been discussed. Deferring HCV therapy pushes the doctor–patient relationship past easily defined boundaries and creates the need for an informed deferral process.56 We have reached an era of perso- nalised medicine in hepatitis C."
Geoffrey Dusheiko, Heiner Wedemeyer
From 1650
Gut December 2012 Vol 61 No 12
This article should be purchased by anyone contemplating triple-combo therapy. It costs $35.00.
I have seen a number of reports of SVR, and it is positive for this who get it, assuming they haven't traded one problem for another. I have also seen a number of reports of lost souls / psyche / cognitive abilities, terrible skin reactions, rapid life-theratening progression of liver disease and other bad side effects, not to mention the routine arthralgia / myalgia complaints. I actually think they've been near a 50-50 or perhaps 60-40 split over the past few weeks.
----------------------------------------------------------------------------------------------------------
"By far, the majority are happy to rid themselves of HCV and feel better than before trt. Most don't have lasting side effects other than the side effect of ridding this ugly virus from their body forever. It certainly beats the alternative."
1) Side Effects - most people probably do have subclinical side effects that they either do not notice (ie - slight flattening of psyche and shaving a point or two off of mental acuity) or do not attribute to INF combo therapy (ie - arthritic symptoms commencing and developing 2 months to one year post-end of treatment).
2) Beats the alternative -- Wait now, what is the alternative? Certain death from liver cancer or liver failure? That seems to be what you suggest.
In at least 19 out of 20 cases, the alternative is living your natural life span and dying from some cause other than Hep C. Those 1 in 20 who might die from Hep C will in all likelihood do it in their 6th or 7th decade of life. A young person contracting serious side effects from INF combo therapy will have problems commencing their 3rd or 4th decade of life. A young 20-somewthing man just posted last week about his severe, life-threatening INF-induced liver problems.
Look, I agree that odds are INF won't totally whack you out.
I would ask you to agree, however, that odds are that Hep C won't kill one, or ever cause any significant health problems in one's life, either, other than those one might create in their own mind from unwarranted fear.
The odds also are about 19 in 20 that if you treated and obtained SVR, it mattered not one whit to benefitting your life expectancy. Yo may equate it with "saving your life" but the hard numbers say that is not the fact. What it did was alleviate fear, fear that is understandable to some extent but also that is encouraged by marketing and advertising.
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf
“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.
http://www.nytimes.com/2010/07/22/business/22hepatitis.html
And you must also agree that INF-combo therapy can also speed death and / or ruin life. That's a fact acknowledged even by the drug manufacturers.
_____________________________________________________________
"PS - An ever increasing number of physicians are starting to question the wisdom and benefit of INF combo therapy."
If that is true then why are we not hearing about it???
Perhaps finger sin your ears?
I hear it from GPs and Family docs in my ocal area, I read it in and from expert Dusheiko himself in a very recent article on triple combo therapy, to wit:
"Patients should understand the inability to accurately predict disease progression, likelihood of response, the regimens, the side effects and the risks and benefits of treatment, and should be cognisant of treatments that are coming down the line or are given this information. Physicians could consider it rational to give treatment to those with progressive disease but to avoid unnecessary or potentially detri- mental treatment. The regimen is not free from the disadvantages of IFN. In giving advice, physicians should clarify the key determinants of response, the likelihood of response (in naïve and prior non-responders), the need for treatment, side effects and safety. Patients with mild disease do not necessarily require immedi- ate treatment, but treatment should not be denied to patients with early stages of disease as those with minimal necroin- flammatory changes and minimal fibrosis are candidates for treatment and have a higher likelihood of response.
Patients with compensated cirrhosis are candidates for treatment; IFNα is difficult to apply in decompensated cirrho- sis and may precipitate deterioration. Compensated cirrhosis without portal hypertension differs markedly from a later stage of cirrhosis characterised by evidence of portal hypertension and thrombocyto- penia or cirrhosis with hepatic decompen- sation.53 54 Physicians must be able to judge the stage of disease and to manage the poor tolerability of triple combination therapy and potential complications of prolonged IFN treatment in patients with advanced cirrhosis.
Psychiatric or other comorbidities may be worsened with IFN treatment so these conditions should be stabilised.55 For prior non-responders and patients with cirrhosis, it may be necessary to take into account the nature of the prior response, the IL28b subtype and HCV subtype if deferring treatment for those unlikely to respond is considered.
For experienced patients, the data to indicate improved SVR rates in patients with first-generation PIs should provide the motivation. However, response rates are suboptimal in prior null responders with cirrhosis and are <10% for previous null responders with cirrhosis and HCV genotype 1a infection. Ultimately, what drives a patient averse to IFN to be treated with telaprevir or boceprevir and PEG-IFN
and RBV? What motivates a patient already treated with IFN to want to do it again with a first-generation PI regimen? What role does the physician have in influ- encing these choices? There are no easy answers. The uniqueness of the HCV treatment decision process has recently been discussed. Deferring HCV therapy pushes the doctor–patient relationship past easily defined boundaries and creates the need for an informed deferral process.56 We have reached an era of perso- nalised medicine in hepatitis C."
Geoffrey Dusheiko, Heiner Wedemeyer
From 1650
Gut December 2012 Vol 61 No 12
This article should be purchased by anyone contemplating triple-combo therapy. It costs $35.00.
Greetings - I read your other post & not sure how it went overlooked but Advocate above has the right of it. It is extremely unlikely you will start treatment tomorrow.
You mentioned you find out your Genotype tomorrow so you will have a better idea of the meds you will treat with (when & if you treat). If it turns out you are Genotype 1 then you may very well follow triple therapy as your doctor mention. If not, the other treatment option (as far as meds go) would be just the Interferon and Ribavarin.
There are lots of threads on here about questions to ask on this visit but mostly if it were me I would ask about all my treatment options. Or if you are certain you are going to treat no matter what your genotype I would be you agree with how your doctor treats side effects.
Do you happen to know the stage of fibrosis you are? Do you happen to know if one of the labs you had back in November was your IL-28B genotype.
___________________
Be sure you post your Genotype so we know which side effects to address. Some sides can kick in right away while others may happen gradually.
You mentioned you find out your Genotype tomorrow so you will have a better idea of the meds you will treat with (when & if you treat). If it turns out you are Genotype 1 then you may very well follow triple therapy as your doctor mention. If not, the other treatment option (as far as meds go) would be just the Interferon and Ribavarin.
There are lots of threads on here about questions to ask on this visit but mostly if it were me I would ask about all my treatment options. Or if you are certain you are going to treat no matter what your genotype I would be you agree with how your doctor treats side effects.
Do you happen to know the stage of fibrosis you are? Do you happen to know if one of the labs you had back in November was your IL-28B genotype.
___________________
Be sure you post your Genotype so we know which side effects to address. Some sides can kick in right away while others may happen gradually.
I agree with Advocate that the next appt will likely be a follow-up to discuss trt options. Take a list of questions with you since there is a lot of information to digest in a short time. It helps to have someone go with you to help remember everything. Be sure to get a contact that you can call with additional questions. We were are nervous beginning trt - this is very normal, the fear of the unknown.
Since many respond to trt differently, its difficult to generalize on how you handle side effects. Some breeze through while others struggle. I began to feel the side effects around 3-4 weeks. For the most part the side effects were very manageable, with some difficult periods of some rash during my 48 week trt. I've since SVR'd and if asked would I do again knowing what trt was like, the answer would be an emphatic - YES!. Hopefully, you'll only have 24 wks if you're doing triple trt.
Some people such as rambleon have had a rough time with trt and the post trt side effects. By far, the majority are happy to rid themselves of HCV and feel better than before trt. Most don't have lasting side effects other than the side effect of ridding this ugly virus from their body forever. It certainly beats the alternative. Some are patiently waiting for an interferon free trt since their biopsy has indicated a low level of fibrosis.
There are many complicated issues to discuss with your doctor to go into this trt with eyes wide open. Try to become as well informed as possible which will ease your worries and help you through trt. There are many very knowledgeable and helpful people on the forum willing to help give you guidance. Good luck moving forward.
Since many respond to trt differently, its difficult to generalize on how you handle side effects. Some breeze through while others struggle. I began to feel the side effects around 3-4 weeks. For the most part the side effects were very manageable, with some difficult periods of some rash during my 48 week trt. I've since SVR'd and if asked would I do again knowing what trt was like, the answer would be an emphatic - YES!. Hopefully, you'll only have 24 wks if you're doing triple trt.
Some people such as rambleon have had a rough time with trt and the post trt side effects. By far, the majority are happy to rid themselves of HCV and feel better than before trt. Most don't have lasting side effects other than the side effect of ridding this ugly virus from their body forever. It certainly beats the alternative. Some are patiently waiting for an interferon free trt since their biopsy has indicated a low level of fibrosis.
There are many complicated issues to discuss with your doctor to go into this trt with eyes wide open. Try to become as well informed as possible which will ease your worries and help you through trt. There are many very knowledgeable and helpful people on the forum willing to help give you guidance. Good luck moving forward.
"PS - An ever increasing number of physicians are starting to question the wisdom and benefit of INF combo therapy."
-------------------------
Just wondering, where did you hear or read that? I have never heard or read that premise in any of the articles, presentations, literature, studies, data that I have read/seen.
As a side note, SVRs are being posted right and left. Some people are definitely benefiting from treatment.
-------------------------
Just wondering, where did you hear or read that? I have never heard or read that premise in any of the articles, presentations, literature, studies, data that I have read/seen.
As a side note, SVRs are being posted right and left. Some people are definitely benefiting from treatment.
I agree with Advocare. You will probably not start treatment this Tuesday. You will probably be discussing more about the treatment, doing some tests, having a liver biopsy. You mentioned 3 drugs so you must be Genotype 1. If your doctor does not mention a liver biopsy, it would be wise to ask him/her about a liver biopsy so that you know at what stage of fibrosis you liver is. If you have a lower fibrosis stage treatment is not nearly as urgent as it would be if you have a higher fibrosis stage. If you have a liver fibrosis stage of 3 or higher, it becomes more urgent to treat sooner rather than later.
Your general health may be a factor too so, if you have other medical problems, be sure to discuss these with your treating doctor.
I would encourage you to try to read as much as possible about Hepatitis C and the treatment so that you know what questions to ask, what the treatment will be, what the side effects can be, and so forth. Also ask as many questions on this forum as you feel the need to ask.
Treatment is no picnic, but it is doable. This forum is a great place to get tips and feedback and help with the side effects. As far as the side effects are concerned, they vary from person to person. Some get several side effects others do not get many at all. Some have more troublesome side effects and others have few side effects. For me they started the first day, but they vary from day to day, both in type and in intensity. One key is to be sure to get your side effects, if you have them, under control immediately. Treatment is much easier if you have a treating team that is able to recognize, access/evaluate, and treat the side effects immediately.
Many of us have treated, are in treatment, or are waiting to treat. Many who have treated are now attaining SVR (cure).
I am 67 (65 when I started treatment). I am Genotype 1. I started with a viral load of 14.4 million. I was at Grade 2, Stage 2 liver fibrosis. I treated with Interferon, Ribavirin, and Incivek for 48 weeks. I finished treatment in August. My 12 week (12 weeks after end of treatment) viral load test was undetectable and this means I have 99.7 % chance for cure, very good odds. Almost all side effects are gone now and I feel 1000 % better than I have felt for 19 years. I feel like I have a new lease on life and I feel great.
So please hang around and ask questions and get the support you needs. We are here to help.
Your general health may be a factor too so, if you have other medical problems, be sure to discuss these with your treating doctor.
I would encourage you to try to read as much as possible about Hepatitis C and the treatment so that you know what questions to ask, what the treatment will be, what the side effects can be, and so forth. Also ask as many questions on this forum as you feel the need to ask.
Treatment is no picnic, but it is doable. This forum is a great place to get tips and feedback and help with the side effects. As far as the side effects are concerned, they vary from person to person. Some get several side effects others do not get many at all. Some have more troublesome side effects and others have few side effects. For me they started the first day, but they vary from day to day, both in type and in intensity. One key is to be sure to get your side effects, if you have them, under control immediately. Treatment is much easier if you have a treating team that is able to recognize, access/evaluate, and treat the side effects immediately.
Many of us have treated, are in treatment, or are waiting to treat. Many who have treated are now attaining SVR (cure).
I am 67 (65 when I started treatment). I am Genotype 1. I started with a viral load of 14.4 million. I was at Grade 2, Stage 2 liver fibrosis. I treated with Interferon, Ribavirin, and Incivek for 48 weeks. I finished treatment in August. My 12 week (12 weeks after end of treatment) viral load test was undetectable and this means I have 99.7 % chance for cure, very good odds. Almost all side effects are gone now and I feel 1000 % better than I have felt for 19 years. I feel like I have a new lease on life and I feel great.
So please hang around and ask questions and get the support you needs. We are here to help.
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