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SHOULD I BEGIN TREATMENT FOR HEP c-HELP PLEASE
I went on this website because I am scheduled to begin treatment on 1-8-2009. I am a trial lawyer and have blocked out every Friday for the next 6 months so I can take the shot of Pegays Thursday night and then the pills 2 times a day.
I have read some of the threads on this site and am now both terrified and confused. Any help would be greatly appreciated.
I was diagnosed in 1994 during insurance physical. I have always been in good shape, 6 ft 180 and job or walk very fast 5-6 times a week 5 miles a day and have done so for years. My ALT/AST was always normal from 1994 until 2-2006. I took liver biopsy on 2-5-2006 and for the first time the blood test I took one day later showed my enzymes were above normal. I continue to believe that it cannot be a coincidence but my doctor says otherwise. My liver biopsy came back a 1 for fibrosis and inflamation and it was read by 3 experts and they all say it showed very little inflamation and minimal fibrosis.
My "titers" have been consistently under 300k and currently are at 110k
I get my blood drawn every 3-4 months and for last 2 years has been about 1.5 normal for both ALT and AST until my last blood test which showed 61 ALT and 37 AST, which I am told is now back to the high end of normal.
My doctor tells me that there is an extremely high chance that I will clear after 30 days (I am geno type 1b) and that if I do there is a 90% chance I will be cured and can stop treating after six months.
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I have never taken any anti-depressant drugs and have declined the offer to begin prior to treatment beginning.
--
After reading these entries I am now thinking that since I am in good shape (I am 56 years old) that maybe I should wait until Vertex 950 or another medication is approved (I have been told by 2011 Vertex should be approved). My doctor has had me take liver spleen scans every 18months and they have always been normal.
So what do I do? What advise could anyone give me because I am terrified. I have a general belief that the only meds you should take are Milk Thistle, Omega-3 and Vitamin C which I have been taking every day for 14 years now!!!! So what guidance can you guys give me.
When I feel totally healthy and have no symptoms should I commence treatment and put these drugs in my system not knowing how they will effect me during treatment and beyond? However, on the other hand if I wait to treat, what are the chances that my liver will rapidly decompensate. My doctor says TREAT NOW because my titers have been low for over 2 years and are not at only 110k??? I had a blood transfusion when I was one year old and since then have not been engaged in any type of activity that could have led to my diagnosis. If it is true that I have had this since age 1 and if in 55 years it has only progressed to this point, should I "risk" that I will only get worse over a short period of time or should I "risk" the short and long term side effects of treatment with Pegays and Ribovirin?
HELP PLEASE with your thoughts and please be BRUTALLY HONEST because a lot is at stake for all of us and I am certain you folks who are involved with this website have much more knowledge than I do.
Sincerely
WK LAW
I have read some of the threads on this site and am now both terrified and confused. Any help would be greatly appreciated.
I was diagnosed in 1994 during insurance physical. I have always been in good shape, 6 ft 180 and job or walk very fast 5-6 times a week 5 miles a day and have done so for years. My ALT/AST was always normal from 1994 until 2-2006. I took liver biopsy on 2-5-2006 and for the first time the blood test I took one day later showed my enzymes were above normal. I continue to believe that it cannot be a coincidence but my doctor says otherwise. My liver biopsy came back a 1 for fibrosis and inflamation and it was read by 3 experts and they all say it showed very little inflamation and minimal fibrosis.
My "titers" have been consistently under 300k and currently are at 110k
I get my blood drawn every 3-4 months and for last 2 years has been about 1.5 normal for both ALT and AST until my last blood test which showed 61 ALT and 37 AST, which I am told is now back to the high end of normal.
My doctor tells me that there is an extremely high chance that I will clear after 30 days (I am geno type 1b) and that if I do there is a 90% chance I will be cured and can stop treating after six months.
--
I have never taken any anti-depressant drugs and have declined the offer to begin prior to treatment beginning.
--
After reading these entries I am now thinking that since I am in good shape (I am 56 years old) that maybe I should wait until Vertex 950 or another medication is approved (I have been told by 2011 Vertex should be approved). My doctor has had me take liver spleen scans every 18months and they have always been normal.
So what do I do? What advise could anyone give me because I am terrified. I have a general belief that the only meds you should take are Milk Thistle, Omega-3 and Vitamin C which I have been taking every day for 14 years now!!!! So what guidance can you guys give me.
When I feel totally healthy and have no symptoms should I commence treatment and put these drugs in my system not knowing how they will effect me during treatment and beyond? However, on the other hand if I wait to treat, what are the chances that my liver will rapidly decompensate. My doctor says TREAT NOW because my titers have been low for over 2 years and are not at only 110k??? I had a blood transfusion when I was one year old and since then have not been engaged in any type of activity that could have led to my diagnosis. If it is true that I have had this since age 1 and if in 55 years it has only progressed to this point, should I "risk" that I will only get worse over a short period of time or should I "risk" the short and long term side effects of treatment with Pegays and Ribovirin?
HELP PLEASE with your thoughts and please be BRUTALLY HONEST because a lot is at stake for all of us and I am certain you folks who are involved with this website have much more knowledge than I do.
Sincerely
WK LAW
Just to caveat on what you said
"In ALL the above cases, all of them, if the infected person had treated and gone SVR then no infection would have been transmitted. So as I see it, we don't get HCV from toothbrushes , needles or having sex - we get it from infected people - always - no exceptions. And as an infected person I personally see it as my personal responsibility to do whatever I reasonably can to not be the person who inadvertently passes this on to others. Certainly treatment falls for me into that area of reasonableness - not only for my own well being but for the well being of others."
If the infected person has very little liver damage they should not feel obligated to treat because there is the chance of transmission to others. The current drugs are brutal as you well know. Not everyone has to treat immediately. Many can wait years or wait for better drugs. First and foremost a person should treat because it is the right time for them to do so given liver stage, insurance coverage, finanacial obligations, family support, not because it's their obligation to prevent others from becoming infected. When a person becomes virus free - SVR - their liver disease will no longer progress. Not being contagious is an added bonus. They must live their life using reasonable caution around others even then. But until the day comes or maybe that day will never come when someone decides to treat, a person with hepc must be comfortable in their own skin and not constantly worry about passing it on to others.
I think we both see things similarly only my perception of why we should treat regarding infecting others is not as primary to the cause as yours. Liver health first, everything else is a plus.
Trinity
"In ALL the above cases, all of them, if the infected person had treated and gone SVR then no infection would have been transmitted. So as I see it, we don't get HCV from toothbrushes , needles or having sex - we get it from infected people - always - no exceptions. And as an infected person I personally see it as my personal responsibility to do whatever I reasonably can to not be the person who inadvertently passes this on to others. Certainly treatment falls for me into that area of reasonableness - not only for my own well being but for the well being of others."
If the infected person has very little liver damage they should not feel obligated to treat because there is the chance of transmission to others. The current drugs are brutal as you well know. Not everyone has to treat immediately. Many can wait years or wait for better drugs. First and foremost a person should treat because it is the right time for them to do so given liver stage, insurance coverage, finanacial obligations, family support, not because it's their obligation to prevent others from becoming infected. When a person becomes virus free - SVR - their liver disease will no longer progress. Not being contagious is an added bonus. They must live their life using reasonable caution around others even then. But until the day comes or maybe that day will never come when someone decides to treat, a person with hepc must be comfortable in their own skin and not constantly worry about passing it on to others.
I think we both see things similarly only my perception of why we should treat regarding infecting others is not as primary to the cause as yours. Liver health first, everything else is a plus.
Trinity
You're getting alot of responses and I'm sure you can sift through all the "evidence" and come up with the verdict that fits for you.
Some comments of my own to add to the mix.......
Your doctor's comment that you have an excellent chance of clearing at 4 weeks is an odd one, in light of the fact that clearing at 4 weeks gives geno 1's closer to a 90% chance of clearing the virus, yet geno 1's in general have an overall success rate of around 45%. How does your doctor figure YOU in particular have an excellent chance of clearing at 4 weeks? I agree with many of the others that his optimism is not based on fact.
It would be more realistic and wiser for you to plan for 48 weeks of treatment. 24 weeks of treatment can be done for geno 1's who clear at 4 weeks but there are many of us who would go the 48 anyway to be absolutely sure until there has been more conclusive data ... such as more substantial numbers of geno 1's who have done 24 weeks of treatment after a 4 week RVR and the subsequent SVR numbers back up 24 weeks of treatment as credible.
On top of that....if you end up not clearing at 12 weeks, then your chances are better if you go to 72 weeks of treatment. At your stage of liver damage, I wouldn't. I would either make your decision at the 4 week or 12 week mark and call it there.
As for your work responsibilities....there is more to take into account on these drugs than taking Fridays off to cover your side effects from a shot day of Thursday evening. I wish these drugs were that predictable. You might find that you're just fine on Fridays and it's other days that you're impacted. There are other potential side effects to take into account as well. The other potential side effects from the drugs are diminished cognizance (known as brain fog around here :), mood alterations that may cause you to be irrationally and uncontrollably irritable with those you encounter daily and mental impacts from mild to extremely severe depression....then there is the fatigue that seems to be ever present. All of this will potentially impact your ability to do your job as well as you are required to. You will need to determine if you can afford that if it comes to that....if you can fit this potential impact into your life right now.
You also need to realize it will impact your relationships with your friends and your family. As hard as they try....even the best intentioned friends and family will have a hard time understanding your needs during this time. I would suggest you take a look at your support system and determine if you are mentally and attitudinally "fit" to really be your own primary support system and determine how much support you should realistically expect from those around you. I was surprised at those who were there for me and also surprised at those who ended up NOT being there for me during treatment. When I started treatment, that was the way I approached it....and put a counsellor in place that I was free to talk to so that I wouldn't be dependent on only family and friends for support, went looking for online resources and found this forum and I found an HCV support group in my city. You know yourself best and what kinds of supports you feel you'll re
Some comments of my own to add to the mix.......
Your doctor's comment that you have an excellent chance of clearing at 4 weeks is an odd one, in light of the fact that clearing at 4 weeks gives geno 1's closer to a 90% chance of clearing the virus, yet geno 1's in general have an overall success rate of around 45%. How does your doctor figure YOU in particular have an excellent chance of clearing at 4 weeks? I agree with many of the others that his optimism is not based on fact.
It would be more realistic and wiser for you to plan for 48 weeks of treatment. 24 weeks of treatment can be done for geno 1's who clear at 4 weeks but there are many of us who would go the 48 anyway to be absolutely sure until there has been more conclusive data ... such as more substantial numbers of geno 1's who have done 24 weeks of treatment after a 4 week RVR and the subsequent SVR numbers back up 24 weeks of treatment as credible.
On top of that....if you end up not clearing at 12 weeks, then your chances are better if you go to 72 weeks of treatment. At your stage of liver damage, I wouldn't. I would either make your decision at the 4 week or 12 week mark and call it there.
As for your work responsibilities....there is more to take into account on these drugs than taking Fridays off to cover your side effects from a shot day of Thursday evening. I wish these drugs were that predictable. You might find that you're just fine on Fridays and it's other days that you're impacted. There are other potential side effects to take into account as well. The other potential side effects from the drugs are diminished cognizance (known as brain fog around here :), mood alterations that may cause you to be irrationally and uncontrollably irritable with those you encounter daily and mental impacts from mild to extremely severe depression....then there is the fatigue that seems to be ever present. All of this will potentially impact your ability to do your job as well as you are required to. You will need to determine if you can afford that if it comes to that....if you can fit this potential impact into your life right now.
You also need to realize it will impact your relationships with your friends and your family. As hard as they try....even the best intentioned friends and family will have a hard time understanding your needs during this time. I would suggest you take a look at your support system and determine if you are mentally and attitudinally "fit" to really be your own primary support system and determine how much support you should realistically expect from those around you. I was surprised at those who were there for me and also surprised at those who ended up NOT being there for me during treatment. When I started treatment, that was the way I approached it....and put a counsellor in place that I was free to talk to so that I wouldn't be dependent on only family and friends for support, went looking for online resources and found this forum and I found an HCV support group in my city. You know yourself best and what kinds of supports you feel you'll re
What you are saying is true but there is a very low probability of passing the virus to family members under normal living conditions. Monogamous couples are advised not to change their sexual habits. Transmission does happen, but the frequency is rare. IV use, dental procedures are another thing. Not knowing I had the disease I took no extra precautions with my family. I think once we become aware of our infection of course it's everyone's obligation to ensure they are extra careful. I am UND right now and even if I were SVR I would still not allow anyone to use my personal items. It's become part of who I am now because of my heightened awareness. However, I don't feel dirty or contaminated or think I'm a potential threat to others. I use common sense and caution and that won't change whether I have the active virus or not. Having this disease doesn't make me feel like I'm a threat to anyone. I am aware of the hazards and take the necessary steps not to infect others. That will never change so I don't struggle with that concept. Yes, I want to be rid of this beast of burden which is why I'm treating but if that doesn't happen I will always feel good about myself regardless and carry no guilt because I am infected.
Trinity
Trinity
My focus is equally on my personal health and my responsibility to others. I am very glad that you have not passed on this disease to other family members. Unfortunately a simple search on this forum for the word "child" shows this is not always the case.
I do look at it as follows: HCV is not a disease like rabies which we get from an animal. HCV is not a disease like staph infection which we get from germs already in the air and environment. We can only get HCV from another infected person.
We don't get HCV from needles and drug use. Needles do not inherently contain the HCV virus. We get HCV from an infected person who used that needle before us. We don't get HcV from dental work. We get HcV from the infected person before us who contaminated the instruments. We don't get HcV from toothbrushes. We get HCV from the infected person who used the toothbrush before us. And I personally did not get HCV from having sex. I got it from the awful person who chose pretend to me that they were not infected (as well as my own foolishness for not taking precautions anyway).
In ALL the above cases, all of them, if the infected person had treated and gone SVR then no infection would have been transmitted. So as I see it, we don't get HCV from toothbrushes , needles or having sex - we get it from infected people - always - no exceptions. And as an infected person I personally see it as my personal responsibility to do whatever I reasonably can to not be the person who inadvertently passes this on to others. Certainly treatment falls for me into that area of reasonableness - not only for my own well being but for the well being of others.
I do look at it as follows: HCV is not a disease like rabies which we get from an animal. HCV is not a disease like staph infection which we get from germs already in the air and environment. We can only get HCV from another infected person.
We don't get HCV from needles and drug use. Needles do not inherently contain the HCV virus. We get HCV from an infected person who used that needle before us. We don't get HcV from dental work. We get HcV from the infected person before us who contaminated the instruments. We don't get HcV from toothbrushes. We get HCV from the infected person who used the toothbrush before us. And I personally did not get HCV from having sex. I got it from the awful person who chose pretend to me that they were not infected (as well as my own foolishness for not taking precautions anyway).
In ALL the above cases, all of them, if the infected person had treated and gone SVR then no infection would have been transmitted. So as I see it, we don't get HCV from toothbrushes , needles or having sex - we get it from infected people - always - no exceptions. And as an infected person I personally see it as my personal responsibility to do whatever I reasonably can to not be the person who inadvertently passes this on to others. Certainly treatment falls for me into that area of reasonableness - not only for my own well being but for the well being of others.
I wish i would have been a little less harsh in my post to you as that is not my style. Being cirrhotic i might look at things a different way then non-cirrhotic people.
I know first hand how one feels when you first find out and don't know anything about cirrhosis. i have a very good doctor at a tp center, have talked with tp coordinators, have had consults with other tp Doctors and yes i have seen first hand ESLD. For the most part i am not a very serious person in life but this i do take serious.
My hepatolgist told me sites like this can be very good and have a wealth of info but its comments like that give them second thoughts on their worth and recomending them to their patients.
Happy new year and truly wishing you the best
cando
I know first hand how one feels when you first find out and don't know anything about cirrhosis. i have a very good doctor at a tp center, have talked with tp coordinators, have had consults with other tp Doctors and yes i have seen first hand ESLD. For the most part i am not a very serious person in life but this i do take serious.
My hepatolgist told me sites like this can be very good and have a wealth of info but its comments like that give them second thoughts on their worth and recomending them to their patients.
Happy new year and truly wishing you the best
cando
I've never dwelled on the potential infection to others thing. I've been married, not married, sexually active, kids, nail clippers, toothbrushes, cuts, scrapes and so on and so forth. Probably had hepc for 30+ years with absolutely NO symptoms. No family member has hepc except me. My concern is my liver and not preoccupied with transmitting the virus to everyone I come in contact with as you seem to be.
Trinity
Trinity
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