Aa
To treat or not to treat, that is the question!
I am so unsure about whether to treat the hep c with the interferon. I already received my first 3 months medicine from Roche. I have been reading so much about the side effects that is scares the heck out of me. All my blood tests are good so far as levels except the viral load is very high. I am a 1A geno, I do not drink and have been on methadone for 15 yrs. I have fibro and irritable bowel syndrome which seems to be better in last few months.My biopsy showed F1-F2, I am not sure when I aquired it, could have been a tattoo or former IV use. Just found out I had it year and half ago. Should I wait or treat? I just need some feedback I guess. My viral load was 24 million and that is the only bad thing I see on the blood tests. I know we addicts always expect the worse, but some of those sides never go away and I hate any mental probs starting, Its a wonder I am not goofy now! I sure you can tell how great I am at making decisions!
I would suggest that you wait. The newer drugs will be released probably sometime next year, and they will 1) improve your chances of clearing 2) shorten the duration of treatment. If you have never treated before I believe they will try you at 24 weeks. Someone who treated previously and failed might not be so lucky and get 48 weeks. If I have this wrong, somebody please correct me!
You already got your medications. Do not back out now. There are always doubts. In case treatment is very bad for you, you can always stop. But you should give it a try. You will be closely monitored for side effects.
Not everybody has horrible sides. For most people they are moderate. You may be the one with very few or very mild side effects. I recommend you start treatment and see how you respond and what side effects you have. And keep us posted on your progress.
Not everybody has horrible sides. For most people they are moderate. You may be the one with very few or very mild side effects. I recommend you start treatment and see how you respond and what side effects you have. And keep us posted on your progress.
24,000,000 is very high and at that level you are at far greater risk of liver damage than someone with a count of 400,000 or so. To teat or not is a decision better made by you and your hepatolgist. If it's just fear of treatment I would say give it a shot and see how it goes. Your dosing can be adjusted if the side effects become too severe and you can discontinue treatment if you have to. Very few people have any adverse side effects that last long past treatment. The lasting side effect that seems to be reported most often is that you are cured. Nothing ventured...
It is true that not everyone experiences all the horror story side effects. I didn't. It wasnt fun, just doable.
And you do have the meds.....the argument could be made to go ahead and start. You could re-evaluate at the 4 week mark and go from there to the 12 week mark, ect.. With SOC, you aren't going to run the risk of mutations if you start and then have to stop.
On the other hand, I have a family member (1a, 1/1) that wanted to start this past winter. The docs really discouraged us saying that by the time she was finishedwith the 48 weeks, the new drugs would be here and she could tx for only 24 weeks. So, she waits....
I treated 48 weeks the year prior and am glad to have gotten it done and over with....no one could have told me otherwise, or made me wait. (totsally hardheaded and stubborn, me) The timing was perfect for me, tho...so I went for it.
Bottom line is, it's a very personal decision and you have to evaluate your stats, your current situation in life, so many factors to consider. Good luck...let us know what you decide.
Isobella
And you do have the meds.....the argument could be made to go ahead and start. You could re-evaluate at the 4 week mark and go from there to the 12 week mark, ect.. With SOC, you aren't going to run the risk of mutations if you start and then have to stop.
On the other hand, I have a family member (1a, 1/1) that wanted to start this past winter. The docs really discouraged us saying that by the time she was finishedwith the 48 weeks, the new drugs would be here and she could tx for only 24 weeks. So, she waits....
I treated 48 weeks the year prior and am glad to have gotten it done and over with....no one could have told me otherwise, or made me wait. (totsally hardheaded and stubborn, me) The timing was perfect for me, tho...so I went for it.
Bottom line is, it's a very personal decision and you have to evaluate your stats, your current situation in life, so many factors to consider. Good luck...let us know what you decide.
Isobella
One little fact we all have to remember just because the FDA will hopefully approve the meds in the next year doesn't mean the insurance companies are just going to give them to everybody right away - they are going to be tremendously expensive I am sure. They could probably even argue against treatment naive - under stage 3 or something like that didn't qualify because they hadn't done regular SOC and failed. I just don't trust them AT ALL. They wouldn't even give me an extension when I needed it but instead said they'd give me a transplant later if I needed that - how nice!
Since you already have all your ducks lined up in a row I'd personally say go for it. Why wait until you really are stage 3/4 to find out perhaps that the current meds didn't work?
Like Izzy I just wanted it gone done and over and out of me. I didn't respond very well, had every side under the sun but still didn't want that virus in me any longer so I finished 72 weeks. I am cured today three years.
Treatment isn't fun but for the most part it is doable. And you have to remember why you are doing it - to save your liver and ultimately your life. Why wait for all of your numbers to suddenly go south and have complicating issues perhaps ------------- you planned on starting so don't get cold feet now! It just takes a few friends to tell you to go for it go for it go for it!!!!!!!!!! You CAN do this if I could do it - believe me. And everyone here will do everything that they can to help you, I promise from the bottom of my heart.
Best of luck with your decision, Debby
Since you already have all your ducks lined up in a row I'd personally say go for it. Why wait until you really are stage 3/4 to find out perhaps that the current meds didn't work?
Like Izzy I just wanted it gone done and over and out of me. I didn't respond very well, had every side under the sun but still didn't want that virus in me any longer so I finished 72 weeks. I am cured today three years.
Treatment isn't fun but for the most part it is doable. And you have to remember why you are doing it - to save your liver and ultimately your life. Why wait for all of your numbers to suddenly go south and have complicating issues perhaps ------------- you planned on starting so don't get cold feet now! It just takes a few friends to tell you to go for it go for it go for it!!!!!!!!!! You CAN do this if I could do it - believe me. And everyone here will do everything that they can to help you, I promise from the bottom of my heart.
Best of luck with your decision, Debby
Thks for the replys! All the feedback helps me! really. I just remember how crappy those flu symptoms felt from several major withdrawals from heroin. Now It has been 18 yrs since I have touched any illegal drugs and I hate drugs! I decided to try and think this out but it is hard knowing it effects everyone differently. So I will make a decision soon, just hope it is the right one!
major withdrawals from heroin"
Oh honey I worried about that too but it's nothing NOTHING like that AT ALL!!!!!!!!!!!!!!!!!!!!!!! If that is what you are worrying about well that's not how it is...I think sometimes because some of us have been through drug withdrawls it's sort of a blessing because having gone through that this is little a little gnat bite compared to a wasp or hornet!
I mean it's not pleasant and the anemia IF you get it later can be a real real drag but still.........................no it's NOTHING like that at all. I am sure others can attest to that too. Totally a different animal!
And no your viral load doesnt mean anything really - I had a very LOW VL and had a hard time beating the disease others have high and have it way easier and none of it has to do with how much damage you have only the biopsy can tell you that (and monitoring liver enzymes can give a clue to what is going on but is not definitive!)
Oh honey I worried about that too but it's nothing NOTHING like that AT ALL!!!!!!!!!!!!!!!!!!!!!!! If that is what you are worrying about well that's not how it is...I think sometimes because some of us have been through drug withdrawls it's sort of a blessing because having gone through that this is little a little gnat bite compared to a wasp or hornet!
I mean it's not pleasant and the anemia IF you get it later can be a real real drag but still.........................no it's NOTHING like that at all. I am sure others can attest to that too. Totally a different animal!
And no your viral load doesnt mean anything really - I had a very LOW VL and had a hard time beating the disease others have high and have it way easier and none of it has to do with how much damage you have only the biopsy can tell you that (and monitoring liver enzymes can give a clue to what is going on but is not definitive!)
Your viral load is irrelevant. I know some people who have 45,000,000 viral load and are infected for over 30 years-and still at stage one. On the other hand, it is possible to have serious damage/cirrhosis and viral load of 100,000. There were studies done that showed that high viral loads are not associated with more rapid disease progression or higher liver enzymes. It might seem strange, but it is true. You are not at higher risk of liver damage because of higher viral load. Viral load is NOT the factor in choosing to treat or not.
The only problem-and it is not true for everyone, only for some patients-is that sometimes it is harder to become UND fast during treatment if your viral load is high. And becoming undetected as fast as possible is the key to treatment success.
Forum members here made great case for both starting now and waiting. Both approaches may work well for you. When I sent my reply, I was just thinking that there are drugs already in your fridge, and you seem to set everything up for treatment. I didn't consider arrival of new drugs which will happen very soon.
I think, if you start and find out you respond slowly and still detected at 12 weeks, you should stop and wait for new drugs. This would be a good middle ground approach.
Good luck to you, and again keep us posted on your progress.
The only problem-and it is not true for everyone, only for some patients-is that sometimes it is harder to become UND fast during treatment if your viral load is high. And becoming undetected as fast as possible is the key to treatment success.
Forum members here made great case for both starting now and waiting. Both approaches may work well for you. When I sent my reply, I was just thinking that there are drugs already in your fridge, and you seem to set everything up for treatment. I didn't consider arrival of new drugs which will happen very soon.
I think, if you start and find out you respond slowly and still detected at 12 weeks, you should stop and wait for new drugs. This would be a good middle ground approach.
Good luck to you, and again keep us posted on your progress.
I would do a lot of research before starting this treatment.....check out Janis7heps.com......there are a LOT of factor to be considered before starting treatment...this is no joke and not a thing to be taken lightly...I've been through it twice already with my husband....he is one tough man - hard as nails...and it kicked the heck out of him....totally in every way......learn as much as you can, please - before you begin....God bless and my best to you!
About side effects - you never know. It effects everyone differently. As far as comparing it to heroin withdrawals, well, I would say for me, it came pretty close sometimes. I went through the treatment for one year - considering you're 1A geno you probably will too. For the first 6 months I was very sick, weak, and emotional. It didn't start getting better until about month 10.
I would recommend going through this treatment ONLY if you are emotionally ready and have a very good support group around you.
You may hate drugs now but a lot of people relapse on treatment.
I was living and working for a 24/7 ministry or wouldn't have started. I'm glad I went through it and it's over, but if it came back I wouldn't do it again. Seriously. I wouldn't do it again.
I would recommend going through this treatment ONLY if you are emotionally ready and have a very good support group around you.
You may hate drugs now but a lot of people relapse on treatment.
I was living and working for a 24/7 ministry or wouldn't have started. I'm glad I went through it and it's over, but if it came back I wouldn't do it again. Seriously. I wouldn't do it again.
If you have not been through treatment before, which sounds like the case, then my advice would be to treat for the following reasons:
- treatment will become harder the older you get
- while new drugs will be available within the next couple years, it is very unlikely that your insurance will cover them until you show that you failed to respond to current standard of care (SOC), which is the drugs you have now. While these drugs are expensive, the new ones are likely to be much more so for the first couple of years. So unless you have 5-10 years to wait, treat now.
- most treatment side effects are manageable through other drugs
Now, for your case, I will say something unconventional. Because your response to current SOC depends a lot on your viral load at the start of treatment, and your viral load is so high, you may want to delay the start of treatment until your viral load drops. It could also go up, but then you just wait until it drops back to your current level and all you have done is lost a couple months. This is because your viral load can vary quite a bit, but what matters is the load at the start of treatment. The lower the load, the better your chances, so you could improve your chances by timing it so that drugs are introduced when the virus population is at YOUR lowest.
There are a couple problems with this strategy. The viral load test is expensive and because that strategy is not part of SOC, you will experience resistance from both doctors and insurance companies. Having said that, even if you get the extra tests, the results may be confusing and it might be hard to decipher when to start.
The reason, I bring this up is that because viral loads can vary by up to a an order of magnitude for YOU, your next load result could be between 2,400,000 and 240,000,000. The high number is almost unheard of, so MY assessment would be that your next load results is likely to be lower than 24,000,000 and this would improve your chance of responding to treatment.
So in summary, my advice is to treat now or monitor you viral load a couple times over the next couple of months until it drops and then start treatment. Good luck.
Abe
- treatment will become harder the older you get
- while new drugs will be available within the next couple years, it is very unlikely that your insurance will cover them until you show that you failed to respond to current standard of care (SOC), which is the drugs you have now. While these drugs are expensive, the new ones are likely to be much more so for the first couple of years. So unless you have 5-10 years to wait, treat now.
- most treatment side effects are manageable through other drugs
Now, for your case, I will say something unconventional. Because your response to current SOC depends a lot on your viral load at the start of treatment, and your viral load is so high, you may want to delay the start of treatment until your viral load drops. It could also go up, but then you just wait until it drops back to your current level and all you have done is lost a couple months. This is because your viral load can vary quite a bit, but what matters is the load at the start of treatment. The lower the load, the better your chances, so you could improve your chances by timing it so that drugs are introduced when the virus population is at YOUR lowest.
There are a couple problems with this strategy. The viral load test is expensive and because that strategy is not part of SOC, you will experience resistance from both doctors and insurance companies. Having said that, even if you get the extra tests, the results may be confusing and it might be hard to decipher when to start.
The reason, I bring this up is that because viral loads can vary by up to a an order of magnitude for YOU, your next load result could be between 2,400,000 and 240,000,000. The high number is almost unheard of, so MY assessment would be that your next load results is likely to be lower than 24,000,000 and this would improve your chance of responding to treatment.
So in summary, my advice is to treat now or monitor you viral load a couple times over the next couple of months until it drops and then start treatment. Good luck.
Abe
"while new drugs will be available within the next couple years, it is very unlikely that your insurance will cover them until you show that you failed to respond to current standard of care (SOC), which is the drugs you have now. "
On what basis or information do you make that statement?
Thanks
On what basis or information do you make that statement?
Thanks
I agree a few of the others that your VL has nothing to do with severity of the HCV or liver damage.
DONT be scared into treatment because of high VL !
On the other hand DONT let what you read about side effects scare you away from starting TX.
Personally I would put the drugs in the fridge and wait for the new meds to come out. You have to consider that the new drugs offer a much better chance for cure and possibly a shorter tx duration. If you have a chance to limit exposure to these drugs by doing only 24 weeks then that has to be factored into a decision.
It still is a very personal decision only you can make and live with.
Best of luck whatever you decide
DONT be scared into treatment because of high VL !
On the other hand DONT let what you read about side effects scare you away from starting TX.
Personally I would put the drugs in the fridge and wait for the new meds to come out. You have to consider that the new drugs offer a much better chance for cure and possibly a shorter tx duration. If you have a chance to limit exposure to these drugs by doing only 24 weeks then that has to be factored into a decision.
It still is a very personal decision only you can make and live with.
Best of luck whatever you decide
My own experience with the medical community, doctors, pharma reps, nurses and insurance companies. While individual results will vary based on a person's diagnosis, their circumstances, insurance and doctor, statistically, an insurer is not going to pay $6,000/month for treatment when a $1,000/month treatment is available.
The next likely SOC sometime in 2012 will be 6 month telaprevir with pegintron and ribavirin treatment for type 1b. Several factors will push insurers to accept this as SOC for treatment naive patients. The most important factor is the overall SVR of those who ENTER treatment compared to cost of treatment. While reported SVR's for this new regimen are higher, so are dropouts due to additional side effects. New studies will give us more solid numbers. The additional costs of treatment due to side effect mitigating drugs is likely to be much lower due to the shorter duration, but initial demand for the new treatment by relapsers and non-responders to today's SOC is likely to be very high for at least the first couple years. Hence my prediction that insurers will start to come over to the telaprevir regimen for treatment naive patients in about 5 years or so. Other treatments are even further out. If you self fund your health care, your liver is in good shape and you are in your 30's or 40's, then waiting for the telaprevir regimen is probably the better choice because it's less than two years away, your chances of SVR will be better and you only have to slog through 6 months. If you have insurance and wait until 2013 only to be told that you don't qualify until you've gone through today's pegintron and riba regimen, then you might as well take your chances at SVR now. As telaprevir treatment gets closer and we know more about its results, then it may be more prudent to wait.
The next likely SOC sometime in 2012 will be 6 month telaprevir with pegintron and ribavirin treatment for type 1b. Several factors will push insurers to accept this as SOC for treatment naive patients. The most important factor is the overall SVR of those who ENTER treatment compared to cost of treatment. While reported SVR's for this new regimen are higher, so are dropouts due to additional side effects. New studies will give us more solid numbers. The additional costs of treatment due to side effect mitigating drugs is likely to be much lower due to the shorter duration, but initial demand for the new treatment by relapsers and non-responders to today's SOC is likely to be very high for at least the first couple years. Hence my prediction that insurers will start to come over to the telaprevir regimen for treatment naive patients in about 5 years or so. Other treatments are even further out. If you self fund your health care, your liver is in good shape and you are in your 30's or 40's, then waiting for the telaprevir regimen is probably the better choice because it's less than two years away, your chances of SVR will be better and you only have to slog through 6 months. If you have insurance and wait until 2013 only to be told that you don't qualify until you've gone through today's pegintron and riba regimen, then you might as well take your chances at SVR now. As telaprevir treatment gets closer and we know more about its results, then it may be more prudent to wait.
I've brought this point about "insurance and the new stuff" before, it has me curious about how Insurors will approach it. Just consider Geno 1 for a moment. 40% success rate treating twice; once for 48 (soc) and then, upon failure, for another 24 (est) with something like TVR. Include all the lab costs, dr. visits, rescue drugs for 72 weeks versus 24 if something like TVR is the first line (and it's anticipated success rate) and not soc.
I'm sure there are people in little insuror cubes pounding out costs/benefits/risks numbers on their little calculators. And you know, patients are not in the equation. Then, enter the government and its big heart......
I'm sure there are people in little insuror cubes pounding out costs/benefits/risks numbers on their little calculators. And you know, patients are not in the equation. Then, enter the government and its big heart......
Great things to think about! I like being able to look at things through others thoughts as well.
The problem for insurers is that not all numbers in such a calculation have the same accuracy. They may be comparing today's total cost of SOC and it's SVR which is based on hundreds of thousands of results v. TVR's SVR's and costs which are based on maybe a couple thousand. Some costs of treatment change drastically when you release it on the general population of practicing hepatologists out there and these guys (well, they're mostly men) screw around ordering extra lab work or doling out extra drugs.
I personally think that TVR availability to hep c patients by 2011 is too optimistic. Most people entering SOC treatment today will know if they SVR'd long before then. Also, I believe that for relapsers and non-responders, recommended TVR treatment will still be 48 weeks (only 12 weeks of TVR and then pegintron and ribavirin for the rest) but this will undoubtedly change.
Here is a very concise summary of what's going on with TVR right now:
http://caps.fool.com/Blogs/ViewPost.aspx?bpid=349095
I personally think that TVR availability to hep c patients by 2011 is too optimistic. Most people entering SOC treatment today will know if they SVR'd long before then. Also, I believe that for relapsers and non-responders, recommended TVR treatment will still be 48 weeks (only 12 weeks of TVR and then pegintron and ribavirin for the rest) but this will undoubtedly change.
Here is a very concise summary of what's going on with TVR right now:
http://caps.fool.com/Blogs/ViewPost.aspx?bpid=349095
that was a very interesting read......
"Also, before reviewing the polymerases you should review the next generation proteases. All proteases are not equal. Genentech and Merck's next gen proteases look amazing"
How exciting - so much going on these days!!!!!!!
"Also, before reviewing the polymerases you should review the next generation proteases. All proteases are not equal. Genentech and Merck's next gen proteases look amazing"
How exciting - so much going on these days!!!!!!!
Good to hear some positive talk, I'm now debating to go forward with tx or not. I know I should, but as I read all of the many side effects it scares the hell out of me. I want to get rid of this, I live alone and have no one close by and that scares me even more. How to do think straight through all of this? Being alone makes it so much harder! All of your input is so important to me right now.
My heptalogist's nurse confided in me that she wishes many of their patients would wait for the newer drugs.
I'd keep track of what's going on with my liver and wait if possible.
The meds you have will last in the fridge.
And viral load does not equal damage.
I'd keep track of what's going on with my liver and wait if possible.
The meds you have will last in the fridge.
And viral load does not equal damage.
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