Aa
Genotype 1b non-responder
Hi to all.
I recently stopped the Interferon Ribavirin therapy since I did dot achieve a 2 log drop by week 12. My viral load decreased from 6 400 000 to 250 000 but not enough to continue the treatment.All health-care professionals working on my case, the GI doctor the nurse etc. were acting with high professionalism during the entire therapy since the day 1 when the therapy has been considered for me. It was just me the one that did not respond.
Now I have to face the long term side effects post therapy that are sometimes awful plus the virus doing its work in my liver.
If anyone sharing a similar experience, genotype 1b and non-responder, would like to give me some feed back or advices on how to manage this situation I will appreciate it a lot.
Is seems this genotype is the worst of all HCVs.
I am waiting the new combination including Telaprevir or Boceprevir to be available for prescriptions so I may get retreated. Until then I am looking for alternatives that will promote the wellness, strengthen my body and to prevent or slow down the damage on my liver. This can be TCM, acupuncture or whatever makes me feel better, but I would like do it through a specialist following a protocol, not on my own buying herbs from Internet. ( I bought herbs from Internet in the past prior to IFN and I could see some benefits specially lowering the ALT ans AST very close to normal). I know very well the alternative solutions do not intend to clear the virus from the body, but if it can help me to live with the virus until a new treatment will be available I would consider it fair enough for me.
God bless you all.
I recently stopped the Interferon Ribavirin therapy since I did dot achieve a 2 log drop by week 12. My viral load decreased from 6 400 000 to 250 000 but not enough to continue the treatment.All health-care professionals working on my case, the GI doctor the nurse etc. were acting with high professionalism during the entire therapy since the day 1 when the therapy has been considered for me. It was just me the one that did not respond.
Now I have to face the long term side effects post therapy that are sometimes awful plus the virus doing its work in my liver.
If anyone sharing a similar experience, genotype 1b and non-responder, would like to give me some feed back or advices on how to manage this situation I will appreciate it a lot.
Is seems this genotype is the worst of all HCVs.
I am waiting the new combination including Telaprevir or Boceprevir to be available for prescriptions so I may get retreated. Until then I am looking for alternatives that will promote the wellness, strengthen my body and to prevent or slow down the damage on my liver. This can be TCM, acupuncture or whatever makes me feel better, but I would like do it through a specialist following a protocol, not on my own buying herbs from Internet. ( I bought herbs from Internet in the past prior to IFN and I could see some benefits specially lowering the ALT ans AST very close to normal). I know very well the alternative solutions do not intend to clear the virus from the body, but if it can help me to live with the virus until a new treatment will be available I would consider it fair enough for me.
God bless you all.
Im a non responder to treatment for hcv genotype 1im hoping that the new drugs that are being tested or going through trials will be available to me.My treatment was halted after 3 months because i did not reach the 2 log drop also during the treatment my white cell count became very low.My liver biopsy results showed swelling-nodules-scar tissue cirrhosis as well,but my liver specialist has informed me the new drugs are expensive and therefore my next consultation/blood tests are 6 months time.Thats when he thinks things might have changed for the better im hoping that these new type drugs will be available to me then.Wish all of you the best for your treatments.
Hello to all that answered back.
Your answers confirmed what I have been considered to do in order to maintain myself in a good shape (I mean “good shape” considering the problem I am dealing with). Definitely promoting a healthy life style is going to help. I understand there is no a standard solution and everyone should find his or her way to deal with this problem. I will go and see a nutritionist and I will see an acupuncturist next week as well, and first of all I will keep a close follow-up of my liver functions by having monthly lab tests.
I did not mention on my first post, since January 2010 and July 2010 when I started the Inteferon, I was on very alkaline diet and I lost a lot of extra weight from 235 pounds to 190 in 4 months. (I lost few pounds during the therapy but my weight is stable now at 187 pounds).
Before I started the therapy I was in very good shape, I was able to spend almost 5 hours per week in a gym. Immediately after starting the therapy, my energy level dropped and I was not able to continue with the gym. I hope that in few months the energy will be restored and I can go again to the gym.
If anyone from this forum needs specific information from me, I will be very glad to share it.
All the best,
canhope
Your answers confirmed what I have been considered to do in order to maintain myself in a good shape (I mean “good shape” considering the problem I am dealing with). Definitely promoting a healthy life style is going to help. I understand there is no a standard solution and everyone should find his or her way to deal with this problem. I will go and see a nutritionist and I will see an acupuncturist next week as well, and first of all I will keep a close follow-up of my liver functions by having monthly lab tests.
I did not mention on my first post, since January 2010 and July 2010 when I started the Inteferon, I was on very alkaline diet and I lost a lot of extra weight from 235 pounds to 190 in 4 months. (I lost few pounds during the therapy but my weight is stable now at 187 pounds).
Before I started the therapy I was in very good shape, I was able to spend almost 5 hours per week in a gym. Immediately after starting the therapy, my energy level dropped and I was not able to continue with the gym. I hope that in few months the energy will be restored and I can go again to the gym.
If anyone from this forum needs specific information from me, I will be very glad to share it.
All the best,
canhope
In your pursuit in being healthy until you can tx with the new drugs you may want to talk to your healthcare professionals about amino acids.
Someone mentioned up there that there is alot of arguing about supplements and that is an understatement but that's normally because the OP of the thread is usually trying to promote sales of a particular brand.
I don't try to promote anything except good health. If you start reading about amino acids, nutraceuticals, dietary supplements or however you want to look at them you can arm yourself with information on what you should take. You may have to make an appointment with a dietitian/nutritionist per your health care provider, but the bottom line is you will know which supplements work best for you once you start taking them.
Also, most experts know very little about HepC so be sure and ask alot of questions if you decide on seeing one of those nutritionists as most of them promote sales of a certain brand.
Personally I take amino acids but mine are for ppl who are on specific meds and maybe that's what you will need to do. good luck
Someone mentioned up there that there is alot of arguing about supplements and that is an understatement but that's normally because the OP of the thread is usually trying to promote sales of a particular brand.
I don't try to promote anything except good health. If you start reading about amino acids, nutraceuticals, dietary supplements or however you want to look at them you can arm yourself with information on what you should take. You may have to make an appointment with a dietitian/nutritionist per your health care provider, but the bottom line is you will know which supplements work best for you once you start taking them.
Also, most experts know very little about HepC so be sure and ask alot of questions if you decide on seeing one of those nutritionists as most of them promote sales of a certain brand.
Personally I take amino acids but mine are for ppl who are on specific meds and maybe that's what you will need to do. good luck
I am sorry to hear that you did not respond better to treatment. It's tough to go through three months and not get a good response. The good news is that your doctor knew to not keep going down this path and wait for the new drugs which hopefully will be available in the second half of 2011.
Most people do not experience serious long term effects from the drugs, although there are definitely some that do. How long has it been since you stopped treatment and what long term issues do you feel that you have at this point. Ribavirin will take about 6 months to get out of your system.
You sound like you have educated yourself about this disease to some extent, so you know that the predominance of people in the US and I assume canada have genotype 1a or 1b.
Although Geno 1 is the most difficult to treat, it is also the genotype getting the most attention from the pharmaceutical companies. Most of the new drugs are developed and clinically tested for geno 1, although they also work for people that have geno 2 and 4.
As always, Hector gave you good advice. If you are coffee drinker the have been several reports and some studies that drinking about 3 cups of coffee per day can help slow liver fibrosis and recently someone posted a study that concluded that it also increases your chance of response to treatment. It may make you a little wired, but it certainly wouldn't hurt unless you have blood pressure problems or some other contra indication for coffee.
I personally am not very well informed about supplements, but there is good amount of information (and a lot of arguing) about them on the forum.
Hang in there and hopefully you will respond to one of the new drugs, there is definitely hope for you.
Welcome to the forum,
Dave
Most people do not experience serious long term effects from the drugs, although there are definitely some that do. How long has it been since you stopped treatment and what long term issues do you feel that you have at this point. Ribavirin will take about 6 months to get out of your system.
You sound like you have educated yourself about this disease to some extent, so you know that the predominance of people in the US and I assume canada have genotype 1a or 1b.
Although Geno 1 is the most difficult to treat, it is also the genotype getting the most attention from the pharmaceutical companies. Most of the new drugs are developed and clinically tested for geno 1, although they also work for people that have geno 2 and 4.
As always, Hector gave you good advice. If you are coffee drinker the have been several reports and some studies that drinking about 3 cups of coffee per day can help slow liver fibrosis and recently someone posted a study that concluded that it also increases your chance of response to treatment. It may make you a little wired, but it certainly wouldn't hurt unless you have blood pressure problems or some other contra indication for coffee.
I personally am not very well informed about supplements, but there is good amount of information (and a lot of arguing) about them on the forum.
Hang in there and hopefully you will respond to one of the new drugs, there is definitely hope for you.
Welcome to the forum,
Dave
Welcome!
It would be helpful if you provided some information about the status of your liver damage. Depending on how far your liver disease has advanced will indicate your current health condition. A biopsy will tell you this.
Genotype 1b's are not doomed by any stretch of the imagination. I'm not sure where that idea can from. I'm sure there are many 1bs on this forum who have successfully cleared the virus. I am 1b myself but unfortunately my liver is too damaged to be treated with the new STAT C meds.
From what you have said in your post you just need to wait for the new STAT C drugs to arrive. Liver damage caused by hep c progresses very slowly over many decades so a couple of years is not something to worry about unless you are stage 4 with cirrhosis. But from what you have said this isn't the case because you recently tried standard therapy but was a non-responder. So you are well enough to treat. The STAT C meds do help to achieve SVR in patients who have not responded using current treatments. You timing is good and you will have a good chance at SVR soon, again depending on how damaged your liver is.
What can you do in the meantime? Avoid all substances that can be toxic to the liver. Number 1 being alcohol. Various pain killers, drugs, etc. Just "google" liver disease to learn about what damages the liver and how to live a healthy lifestyle.
Trying to change your blood levels is a waste of time in my opinion. Blood levels are always constantly changing anyway. As long as you have chronic hep c it will continue to damage your liver. That is the crux of the problem. It is LIVER DISEASE that you have to be concerned about. Advanced liver disease is what people die of, not just having chronic hep c. That is why most people with HCV don;t even know they are infected and don't have any symptoms from hep c. It is only when their liver becomes very damaged that complications from LIVER DISEASE begin to appear. The virus like all viruses needs to replicate or die. So it replicates in the liver. Damaging the liver in the process. There is nothing you can do about that except rid yourself of the virus.
Good luck!
hectorsf
It would be helpful if you provided some information about the status of your liver damage. Depending on how far your liver disease has advanced will indicate your current health condition. A biopsy will tell you this.
Genotype 1b's are not doomed by any stretch of the imagination. I'm not sure where that idea can from. I'm sure there are many 1bs on this forum who have successfully cleared the virus. I am 1b myself but unfortunately my liver is too damaged to be treated with the new STAT C meds.
From what you have said in your post you just need to wait for the new STAT C drugs to arrive. Liver damage caused by hep c progresses very slowly over many decades so a couple of years is not something to worry about unless you are stage 4 with cirrhosis. But from what you have said this isn't the case because you recently tried standard therapy but was a non-responder. So you are well enough to treat. The STAT C meds do help to achieve SVR in patients who have not responded using current treatments. You timing is good and you will have a good chance at SVR soon, again depending on how damaged your liver is.
What can you do in the meantime? Avoid all substances that can be toxic to the liver. Number 1 being alcohol. Various pain killers, drugs, etc. Just "google" liver disease to learn about what damages the liver and how to live a healthy lifestyle.
Trying to change your blood levels is a waste of time in my opinion. Blood levels are always constantly changing anyway. As long as you have chronic hep c it will continue to damage your liver. That is the crux of the problem. It is LIVER DISEASE that you have to be concerned about. Advanced liver disease is what people die of, not just having chronic hep c. That is why most people with HCV don;t even know they are infected and don't have any symptoms from hep c. It is only when their liver becomes very damaged that complications from LIVER DISEASE begin to appear. The virus like all viruses needs to replicate or die. So it replicates in the liver. Damaging the liver in the process. There is nothing you can do about that except rid yourself of the virus.
Good luck!
hectorsf
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