Aa
Length of treatment
My husbands viral count went from 8 million to 10 thousand after only 4 weeks of treatment. His doctor told him he would have to continue treatment for 48 more weeks. He has the 1A type and is in stage two. If his viral level returns to a normal level in the next few months why would he have to continue treatment for so long?
I am going to post a quick version here of why I promote extended tx. This is not to scare anyone out of doing tx by any means just explain why I think it is important to do everything possible to achieve SVR the first time.
My first time on tx (pegintron) was for 48 weeks. They were the hardest weeks of my life. I was depressed at the time,(started on ADs), at the end of a divorce, my only child had left for the Navy and I was alone. Then 911 happened,so my meds were delayed over a week, and I didn't know where my son was. I couldn't get out of bed for almost 3 months the sides were so bad, I slept 12-16 hours a day. Well with the help of ADs and pain killers I got through it. I was able to go back to work part time and finshed my tx. Life was good my hair grew back, my strength got better, I was energetic, I moved to Tennessee, I was happy again. For about 2 months,.then I found out I relapsed. After all I had gone through I never questioned starting back on tx for the second time. I was sent to a hepatologist (I didn't like the way I was treated here in Tenn, so I went back to Michgian and they agreed to treat me long distance)
My doctor told me they were going to do 72 weeks this time on pegasys since I responded so well to 48 weeks that he was confident with extended time I would reach SVR. So I started again. He was very agressive with keeping me on full dose. He sent me all copies of my blood work and I drove to Michigan every 2-3 months for check ups. (Had most my blood work done here)I was kept on the Ads and intervened with procrit and neupogen when the time came. I was given scripts for Vicodin and imitrex shots for headaches and bone pains and stayed on course. I was able to stay working the full time.
Now comess the bad part, during the course of my second round of tx, my thyroid went hypo (hypotyroidism) so now I needed to also take synthroid ( and will have to the rest of my life) I gained over 20 ponds on tx (and continue to keep gaining due to the thyroid issue) I went in regularly for dental cleanings and check ups) and in 3 month period I had lost over 3 mm of bone mass in my upper jaw. I went from having beautifully straight healthy teeth to them telling me that ALL of my top teeth needed to be pulled. (did not have dental insurance at the time, our unionlostit 3 months previous) I questioned it over and over how this could have happened and was told that more than likely "all the meds you have been on". I appealed to our health insurance to Help cover some of the cost and was turned down. So I paid the money $6500 out of pocket and did my research. After sending letters from my new and old dentist, my hepatologist, My PCP and about 40 pages from different wed sites. I was finally able to prove to them that the combined combination of Hep C, interferon, ADs and synthroid IS whatcaused my bone loss and they have now agreed to reimburse me for my expenses.( all of these meds cause dry mouth, which in my case, caused the degree of bone loss.)
So my whole point here is......while I am definatley not the NORM as far as bad side effects they can and do happen. You see I did not just do 48 weeks or 72 weeks but I had those meds in me for 120 weeks. Had I done the extended 72 weeks the first time I might never had to do tx twice, AND I might never have gone hypo, so I would not have had to be on synthyroid or the Ads as long as I was.
If I can save one person from having to go through tx twice than it is worth it to me to keep pushing entended tx the first time, especially for us hard to treat 1s. Still it is a very personal decision that everyone has to decide for themselves.
I see what tx (and a bunch of other meds) has done to me everytime I look in the mirror, but everytime I look in my heart or my grandsons face I know why I did tx. (not once but twice)
I hope this helps you to better understand why "I" push for extended tx the first time.
My first time on tx (pegintron) was for 48 weeks. They were the hardest weeks of my life. I was depressed at the time,(started on ADs), at the end of a divorce, my only child had left for the Navy and I was alone. Then 911 happened,so my meds were delayed over a week, and I didn't know where my son was. I couldn't get out of bed for almost 3 months the sides were so bad, I slept 12-16 hours a day. Well with the help of ADs and pain killers I got through it. I was able to go back to work part time and finshed my tx. Life was good my hair grew back, my strength got better, I was energetic, I moved to Tennessee, I was happy again. For about 2 months,.then I found out I relapsed. After all I had gone through I never questioned starting back on tx for the second time. I was sent to a hepatologist (I didn't like the way I was treated here in Tenn, so I went back to Michgian and they agreed to treat me long distance)
My doctor told me they were going to do 72 weeks this time on pegasys since I responded so well to 48 weeks that he was confident with extended time I would reach SVR. So I started again. He was very agressive with keeping me on full dose. He sent me all copies of my blood work and I drove to Michigan every 2-3 months for check ups. (Had most my blood work done here)I was kept on the Ads and intervened with procrit and neupogen when the time came. I was given scripts for Vicodin and imitrex shots for headaches and bone pains and stayed on course. I was able to stay working the full time.
Now comess the bad part, during the course of my second round of tx, my thyroid went hypo (hypotyroidism) so now I needed to also take synthroid ( and will have to the rest of my life) I gained over 20 ponds on tx (and continue to keep gaining due to the thyroid issue) I went in regularly for dental cleanings and check ups) and in 3 month period I had lost over 3 mm of bone mass in my upper jaw. I went from having beautifully straight healthy teeth to them telling me that ALL of my top teeth needed to be pulled. (did not have dental insurance at the time, our unionlostit 3 months previous) I questioned it over and over how this could have happened and was told that more than likely "all the meds you have been on". I appealed to our health insurance to Help cover some of the cost and was turned down. So I paid the money $6500 out of pocket and did my research. After sending letters from my new and old dentist, my hepatologist, My PCP and about 40 pages from different wed sites. I was finally able to prove to them that the combined combination of Hep C, interferon, ADs and synthroid IS whatcaused my bone loss and they have now agreed to reimburse me for my expenses.( all of these meds cause dry mouth, which in my case, caused the degree of bone loss.)
So my whole point here is......while I am definatley not the NORM as far as bad side effects they can and do happen. You see I did not just do 48 weeks or 72 weeks but I had those meds in me for 120 weeks. Had I done the extended 72 weeks the first time I might never had to do tx twice, AND I might never have gone hypo, so I would not have had to be on synthyroid or the Ads as long as I was.
If I can save one person from having to go through tx twice than it is worth it to me to keep pushing entended tx the first time, especially for us hard to treat 1s. Still it is a very personal decision that everyone has to decide for themselves.
I see what tx (and a bunch of other meds) has done to me everytime I look in the mirror, but everytime I look in my heart or my grandsons face I know why I did tx. (not once but twice)
I hope this helps you to better understand why "I" push for extended tx the first time.
I'm not a big fan of blindly following your doctor. There are ways to bring up issues without undermining their efforts. Being prepared with studies is one approach. Of course, I didn't mean to literally fax it to them. :)
The key in my experience is knowing exactly what you want to get out of treatment. Once you're clear in your mind, everything else follows and hopefully without changing doctors. :) This is easier said than done since it involves a lot of homework to convince yourself that you know what's best. This is a little different from the trusting your doctor approach but it suits me.
If you're so motivated, Projects In Knowledge is a great site to eductate yourself. http://www.projectsinknowledge.com/
Somewhere on that site you'll find not just studies but guidelines from this country's leading heptologists suggesting 24 weeks for unremarkable geno 2's and 3's.
That said, best of luck whatever route you take. As we say many times, tx is not a science and there's room for differing points of view.
-- Jim
The key in my experience is knowing exactly what you want to get out of treatment. Once you're clear in your mind, everything else follows and hopefully without changing doctors. :) This is easier said than done since it involves a lot of homework to convince yourself that you know what's best. This is a little different from the trusting your doctor approach but it suits me.
If you're so motivated, Projects In Knowledge is a great site to eductate yourself. http://www.projectsinknowledge.com/
Somewhere on that site you'll find not just studies but guidelines from this country's leading heptologists suggesting 24 weeks for unremarkable geno 2's and 3's.
That said, best of luck whatever route you take. As we say many times, tx is not a science and there's room for differing points of view.
-- Jim
I go to the VA in Orlando FL. The tx team has been doing this for some time now. I could run around and try to undermine their efforts but it would cause much discension. At this point I would do 2 shots a week and take 14 ribas a day if they wanted me too.....I was just whinning about how they burst my bubble on the length of tx. Thanks for your insight.....I am so blessed to be able to correspond with like minded and afflicted people.
Fax this to your doctor:
http://www.hivandhepatitis.com/hep_c/news/120303_a.html
http://www.hivandhepatitis.com/hep_c/news/120303_a.html
Is your doc a liver specialist who treats a lot of hep c patients? The norm is 24 weeks unless there're special circumstances such as previous treatment failure or significant liver damage. Not saying this is your case, but unfortunatly many doctors are not very knowledgeable about treatment. You might consider an outside consult.
-- Jim
-- Jim
That is what I was assuming also....total of 24wks.
It burst my bubble. I thought I was half way through.
Doc told me when I started that the jury is still out
on the 24wk plan. I told him that I was willing to do
anything....I really humbled up.
Now I'm backstepping....hehehehehe This aint nothing nice!
It burst my bubble. I thought I was half way through.
Doc told me when I started that the jury is still out
on the 24wk plan. I told him that I was willing to do
anything....I really humbled up.
Now I'm backstepping....hehehehehe This aint nothing nice!
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