Aa
Change of plans for tx
I know I have been one of the 2b's on the forum who has advocated completing the standard protocol of 24 weeks. Well, a change of heart shows flexibility, right? My brief background: I am 47, grade 1 stage 0, probably have had hep c 30 yrs, very healthy vegetarian and runner. Deciding on this toxic treatment was a major decision (I mostly eat organic foods, rarely take a tylenol so putting these meds in my body felt very 'wrong'). With the support of this awesome board and thinking my struggles with fatigue and depression may be related to the hep c, I decided to treat.
I have now decided to end my treatment at 18 weeks. I met with my doctor last week after injecting shot #18 and he very strongly recommended I stop treatment -- that I was really overdoing it by going the full 24 weeks. He thinks because of all the following: clearing at 4 weeks <2 viral load, no liver damage, the interferon (pegasys) is a whopping amount for my weight (108) and the most recent studies and work he and his colleagues are following recommend 12 weeks.
I would not have stopped at 12 weeks -- the Italian study shows the rate of relapse is double for the 12 week group vs. the 24 week group but 18 weeks seems like a good compromise.
This forum and the amazing people I have 'met' have been invaluable. Not only have I received highly intelligent and knowledgeable information that truly has made a difference in my treatment approach but I have experienced the shared understanding and compassion that so many here give on a regular basis. You are a wonderful group of people and I appreciate you all.
I have now decided to end my treatment at 18 weeks. I met with my doctor last week after injecting shot #18 and he very strongly recommended I stop treatment -- that I was really overdoing it by going the full 24 weeks. He thinks because of all the following: clearing at 4 weeks <2 viral load, no liver damage, the interferon (pegasys) is a whopping amount for my weight (108) and the most recent studies and work he and his colleagues are following recommend 12 weeks.
I would not have stopped at 12 weeks -- the Italian study shows the rate of relapse is double for the 12 week group vs. the 24 week group but 18 weeks seems like a good compromise.
This forum and the amazing people I have 'met' have been invaluable. Not only have I received highly intelligent and knowledgeable information that truly has made a difference in my treatment approach but I have experienced the shared understanding and compassion that so many here give on a regular basis. You are a wonderful group of people and I appreciate you all.
Bob,
I hear you. I've also had a rough time with sides, including sinusitis although I haven't had headaches that severe.
You've probably tried most of these, but here's my list: moist het/and/or cold packs; steam inhaler; Allegra or allegra D;
Nasonex; Rhinocort; antibiotics; saline nasal wash; MRI of the sinuses. Don't know where you are but hopefully the sinus problems are being agravated by the allergy season which eventually will be over.
Stay the recommended 40 week course as best you can. But since you're a stage 2, you've got lots of wiggle room.
-- Jim
I hear you. I've also had a rough time with sides, including sinusitis although I haven't had headaches that severe.
You've probably tried most of these, but here's my list: moist het/and/or cold packs; steam inhaler; Allegra or allegra D;
Nasonex; Rhinocort; antibiotics; saline nasal wash; MRI of the sinuses. Don't know where you are but hopefully the sinus problems are being agravated by the allergy season which eventually will be over.
Stay the recommended 40 week course as best you can. But since you're a stage 2, you've got lots of wiggle room.
-- Jim
Hi Jim
My pre-tx vl was 1.1 million.
Genotype 4 has not been studied as much as the others, so unfortunately there isn't much data on tx duration.
It is the sx that have had me considering shortening the tx. Recently For the last three weeks I've had sinusitis, which gives me very severe headaches. These headaches last anywhere from 1/2 hour to 4 hours. I get one every night between 12 and 2 and they often last until 4 AM. I have some pain meds which work, but one dose wipes me out for a whole day.
I guess I am going to take it as far as I can, it is just that sometimes I don't know if I can go the whole 48.
Take care
Bob
My pre-tx vl was 1.1 million.
Genotype 4 has not been studied as much as the others, so unfortunately there isn't much data on tx duration.
It is the sx that have had me considering shortening the tx. Recently For the last three weeks I've had sinusitis, which gives me very severe headaches. These headaches last anywhere from 1/2 hour to 4 hours. I get one every night between 12 and 2 and they often last until 4 AM. I have some pain meds which work, but one dose wipes me out for a whole day.
I guess I am going to take it as far as I can, it is just that sometimes I don't know if I can go the whole 48.
Take care
Bob
Hey, artgal, you dont sound to happy about your decision to curtail or cut the treatment short of what was originally perscribed. Are your CBC all within specs? That outcome what would be the only reason to deviate from the original plan of treatment. But I am no Doctor. But if it was me, I'd be asking about my CBC and find out if they are in specs. Good Luck though, just the same. Yours, Paul* Hey everyone, you really get me riled when you can say in such definitive terms the length of time you all had Hep-C. My Gastrointestinal Doctor treats a Lot of Hepatitis Patients but even after by Biopsies and honest explanation of my lifestyle, the best he can tell me is, "You've had it for years".
I wish you forever SVR and glowing health soon. It has been 16 days since my treatment ended. It sure feels good to get it behind you and feel good again! I know this treatment was really hard on you, but it'll be worth it to have the big prize!
Happy future,
Laika
Happy future,
Laika
Kilby ain't the most articulate or animated guy in the world, but he says what's on his mind. With me, he asked if I was going 12 or 24. He had a med student there and was explaining the Italian study and said that 12 weeks was not FDA approved b/c they required large-scale studies. Then he looked at me and said, "12 weeks is what I would do."
He also said there was a study going on indicating that type 2's who treat with pegasys (recall the Italian study used pegintron, like me) may only need 16 weeks, if they clear at 4 weeks. I don't know which is worse, 12 weeks of ass-kicker pegintron and riba or 16 weeks of slightly-less ass-kicker pegasys and riba.
DJL
He also said there was a study going on indicating that type 2's who treat with pegasys (recall the Italian study used pegintron, like me) may only need 16 weeks, if they clear at 4 weeks. I don't know which is worse, 12 weeks of ass-kicker pegintron and riba or 16 weeks of slightly-less ass-kicker pegasys and riba.
DJL
I am a 55yr old male, genotype 4, stage 2, grade 3. I've had HCV for 27 years.
I have gone through the same dilemma as you, I organic foods, make sure everything I use is free of toxins. I kept myself in shape by hiking and backpacking the magnificent canyons of the Southwest. I have always tried to keep myself in touch with the sacred spirit of the Earth Mother.
Deciding on treatment was very difficult for me, putting these toxic drugs in my body makes me less connected to the earth.
I decided to treat because my ALT suddenly rose from very near normal to 250 and I went form stage 0 to stage 2 in 7 years. It seemed to me that I was progressing rapidly. I know I am taking a risk, but HCV is a toxin as well.
Being genotype 4, I am on the 48-week plan, but having been undetectable at week 4 and 12, I have had thoughts of stopping at 24 or 36 weeks. If I had not been undetectable at week 12 I would have stopped.
I have decided that if I make it through tx, I am going to leave the city and move to the rural New Mexico. I will be much poorer, but I am very ready for that.
Artgal, I wish you all the best
I have gone through the same dilemma as you, I organic foods, make sure everything I use is free of toxins. I kept myself in shape by hiking and backpacking the magnificent canyons of the Southwest. I have always tried to keep myself in touch with the sacred spirit of the Earth Mother.
Deciding on treatment was very difficult for me, putting these toxic drugs in my body makes me less connected to the earth.
I decided to treat because my ALT suddenly rose from very near normal to 250 and I went form stage 0 to stage 2 in 7 years. It seemed to me that I was progressing rapidly. I know I am taking a risk, but HCV is a toxin as well.
Being genotype 4, I am on the 48-week plan, but having been undetectable at week 4 and 12, I have had thoughts of stopping at 24 or 36 weeks. If I had not been undetectable at week 12 I would have stopped.
I have decided that if I make it through tx, I am going to leave the city and move to the rural New Mexico. I will be much poorer, but I am very ready for that.
Artgal, I wish you all the best
I certainly understand how you feel but cuting tx shorter than 48 weeks can be risky. What was your pre-tx viral load?
A recent study showed that geno 1's who cleared the virus in 4 weeks AND had pre-tx viral loads of <600,000, had identical chances of clearing the virus in 24 verus 48 weeks.
http://tinyurl.com/c8kus
Whether this relates to geno 4's, don't know. Also, these were Europeans (probably lower body fat) who were all treated with Peg Intron.
So if you had a low pre-tx viral load, 24-weeks is certainly a thought. And you have a little wiggle room if you relapse, but not a lot because your level of fibrosis is moving along.
Anything serious with your side effects? If you're tolerating tx well, that's one more factor in favor of going the longer path.
BTW you only need 40 weeks to complete the full course. Current guidelines for geno 1's at least are to treat 36 weeks after being non-detectible. So that's two months you just gained right now. :)
-- Jim
A recent study showed that geno 1's who cleared the virus in 4 weeks AND had pre-tx viral loads of <600,000, had identical chances of clearing the virus in 24 verus 48 weeks.
http://tinyurl.com/c8kus
Whether this relates to geno 4's, don't know. Also, these were Europeans (probably lower body fat) who were all treated with Peg Intron.
So if you had a low pre-tx viral load, 24-weeks is certainly a thought. And you have a little wiggle room if you relapse, but not a lot because your level of fibrosis is moving along.
Anything serious with your side effects? If you're tolerating tx well, that's one more factor in favor of going the longer path.
BTW you only need 40 weeks to complete the full course. Current guidelines for geno 1's at least are to treat 36 weeks after being non-detectible. So that's two months you just gained right now. :)
-- Jim
What an enviable position you are in -- done at 18 weeks! I wish you all the best.
Take care,
Susan
Take care,
Susan
Well the very best to you. I sincerely hope you have attained SVR forever. Keep on runnin'
Kathy
Kathy
Hi, read your post with interest because I have some of the same circumstances as you, unfortunately not your geno (I'm a 1a, sniff, sniff.) But I am a bx 1 as well, with good labs. I've had it for about 30 years and have only been symptomatic for the past year (meaning more fatigue with a few flareups - that seem to be held at bay with my health regimen, for the most part.) I, like you, am a typical "health nut," though maybe we've been mainstreamed as of late and not thought of as nuts anymore, ha! It is extremely, extremely counter-intuitive for me - even the thought of ingesting these toxic drugs - so I know what you mean.
In fact, I'm doing hynosis now to get over my prejudice against them and make my mind work for them, I'll need all the help I can get. One of the reasons I read these boards is to witness some of the bravery and fortitude I see so often in so many people. Many are dealing w/ much worse than I am, it gives me perspective. One thing I have noticed, as anecdotal and unscientific as it seems, is that the people who qualify themselves as being very healthy with healthy lifestyles seem to do pretty well with the treatment, overall. Makes sense. That gives me hope. And youre one of the people who have given me hope- the best of luck to you, please, please keep us posted. Yipee for you, I know one day less of that stuff is probably met with gratitude.
In fact, I'm doing hynosis now to get over my prejudice against them and make my mind work for them, I'll need all the help I can get. One of the reasons I read these boards is to witness some of the bravery and fortitude I see so often in so many people. Many are dealing w/ much worse than I am, it gives me perspective. One thing I have noticed, as anecdotal and unscientific as it seems, is that the people who qualify themselves as being very healthy with healthy lifestyles seem to do pretty well with the treatment, overall. Makes sense. That gives me hope. And youre one of the people who have given me hope- the best of luck to you, please, please keep us posted. Yipee for you, I know one day less of that stuff is probably met with gratitude.
artgal,
So glad to hear that you can be done!
Best wishes in the future and SVR FOREVER!!!
Smiles,Sue
So glad to hear that you can be done!
Best wishes in the future and SVR FOREVER!!!
Smiles,Sue
Don't know about the Italian study, but newer studies show that geno 2b's who clear the virus at week #4, and treat for 12 weeks total have close to a NINETY PER CENT chance of clearing the virus. http://www.medscape.com/viewarticle/507068
It sounds like you and your doctor have carefully evaluated the pro's and con's of continuing on. With 18 weeks under your belt, your chances of SVR are terrific.
Maybe if you were a stage 4, the decision would be different, but as a stage 0, you not only have wiggle room, but you can do jumping jacks in the space. :) Putting yourself through additional discomfort and risk from these drugs doesn't make sense in your case.
All the best and keep us posted. When are you having your next PCR? A thirty-day neg PCR post treatment is about ninety-per cent accurate of SVR.
-- Jim
It sounds like you and your doctor have carefully evaluated the pro's and con's of continuing on. With 18 weeks under your belt, your chances of SVR are terrific.
Maybe if you were a stage 4, the decision would be different, but as a stage 0, you not only have wiggle room, but you can do jumping jacks in the space. :) Putting yourself through additional discomfort and risk from these drugs doesn't make sense in your case.
All the best and keep us posted. When are you having your next PCR? A thirty-day neg PCR post treatment is about ninety-per cent accurate of SVR.
-- Jim
I pray you have attained SVR. If it comes back, don't worry. There are txs down the road that could clear HCV in a much shorter period of time, less sxs or less toxic. Many on this board, including myself, will agree that if your bx was stage 0-1 and if HCV did not progress over 20-30 years you could wait for other txs. Of course, it is important to monitor and make sure HCV doesn't progress. I am happy for you. Go live your life, but come back every once in a while and say hello.
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