I have around about 3 weeks of this combo left. I can honestly say at the beginning I was slightly concerned if it would bother my kidneys, as mine tend to be very sensitive to medications. I had constant kidney problems from puberty to young adulthood that was just part of body changes. I had it a couple of times so bad I couldn't walk. These meds have not bothered me at all. I have noticed I now wake up early everyday naturally, and around midnight I need to sleep. So I now need around 7 hrs sleep and feel great. Before the meds, I needed a lot of sleep, especially naps even though I'd had 9 hrs sleep that night. Once your husband is cured a lot of problems will regress. I can recommend cutting all sugar from his diet with the exception of natural sugars in fruit and if needed some honey etc. Sugar acts like alcohol on the liver and puts it under tremendous stress. I don't have much liver damage because I am female, youngish, and I have the protection of estrogen as I have not reached menopause. Sadly, men tend to progress much faster and incur much damage. I hope the next couple of months go as smoothly as it begun.
L
Sydhanrahan said
Aug 22, 2016
Hi Susie,
im sure you made the right decision to leave the riba out. The physical and emotional side effects are harsh. I hear what you say about reducing the strain on the liver through healthy life style. For me, giving up alcohol was huge and I haven't really got any further than that.
Also know my teeth are on their last shaky pegs but the idea of false ones just freaks me out.
im sure the rest of his treatment will be as uneventful as the first 4 weeks.
Take care,
Syd
Susie1 said
Aug 21, 2016
Thank you so much Syd. I believe nutrition and lifestyle has a lot to do with it. If we take away some of the liver's workload, I believe it can heal. So over the last 15 years, we have no toxins in our home, use mostly organic whole food, juicing, exercise, meditation and use only natural personal care products. We are now incorporating chiropractic and some mind-body techniques (Body Code). We have also explored the dental connection to health issues. I work at a clinic where we use biological dentists to evaluate any issues that may be connected - such as an infected root canal on the liver meridian or subclinical bone infections. If the immune system is busy working on things in the mouth, it can effective work best throughout the body. So I do strongly believe the liver can heal. Just need to be encouraged regularly
Susie1 said
Aug 21, 2016
We decided on the Sof/Dak because he was still on omeprazole and we just did not want to wait any longer. He is now off the omeprazole and on propanolol (beta blocker - low dose) to help with the portal hypertension. We felt intuitively that the Ribavirin would not be good for him - psychologically mainly. We are taking a gamble that the varices are getting better and feeling that 3x was too invasive. Treating the root cause felt like a better approach. Thank you for your support.
Sydhanrahan said
Aug 21, 2016
Hi Susie,
i did sof/ dac/RIBA for 12 weeks and then just Sof/dac for another 12. I too was a decompensated cirrhotic when I began treatment last Dec. I had ascites and grade 1 Varicess. (The spell check goes into overdrive when I input that v word so I'm giving up the tussle! )
i was undetected at week 8 and am waiting for final post 12 week bloods now. My ascites is minimal now, and at last count my bloods had come down towards normal but some still out of whack. before I began treatment I was exhausted, had cramps in my hands and calves, bleeding in my gums, no appetite, disturbed sleep Patterns and generalised pain in my legs and back. Most of those symptoms have gone now - not the pain unfortunately. I found RIBA very difficult but had no symptoms on just the oyher two.
it took forty years for my liver to get to that stage and it would be unrealistic to imagine that it's going to heal over night now. My specialist told me that most people's improve but for some reason a small percentage go on deteriorating. At the moment I feel like I might be in the majority.
Depression and infections have been a feature of my whole adult life and sometimes I feel like a dark cloud is lifting and the real, amazing, beautiful, scary world is Becoming visible.
I hope your husband's journey is similar.
Syd
Canuck said
Aug 21, 2016
Hi susie,
So glad to hear you and hubby got it started, that he is 4 weeks into sof/dac!
I can only agree with what tig said, you are doing all the right things. All this stuff IS scary and I know how much you two are seeking reassuring relief. It WILL come. Just getting the hcv treatment underway now, means you have come a long way already! You have already crossed some great hurdles. Good for you.
I am somehow missing info tho, is the length of the sof/dac 24 weeks? I assume it is. I remember there was talk of doing 24 weeks of harvoni originally, but then came the delays with varices banding and the possible interference of being on omeprazole. I recall you and he were not keen on adding riba to a regime. How did you and your doc finally decide on sof/dac?
He had 3 bandings, and no TIP, is that right? How do they feel the varices are now, and is he still on the omeprazole?
Glad you are not discerning any great side effects attributable to the sof/dak. Small blessings.
Things should start turning your way from now on. It's early days, but I still hope you might see some changes for the good in his labs to be done next week - that is always reassuring. You are on your way! Good going! BTW - he is a lucky guy to have you in his corner. C.
Observer said
Aug 21, 2016
Hiya Susie,
I'm not ex cirrhotic (yet) but I am HVC free and my liver sure does work much better than it did before treatment.
My ALTs ALTs hovered between the 50's and the high 90's for over 30 years
4 weeks after I started treatment, they went into the teens where they remain.
my years of HCV caused me to have a number of nasty, confusing immune issues which are now less horrid to live with, I'm working on fixing my lymphatic system and I'm pretty confident that with care, my chirrosis will reverse eventually. The liver does regenerate.
Sounds like you are doing everything right with the hydration, nutrition...maybe foot/leg massage would help his swollen feet, I'm sure he won't mind trying
Let us know about his bloodwork
Alison
Susie1 said
Aug 20, 2016
Thank You!! He still gets some swelling in his feet which scares me. When he does, he rests more, drinks a lot of diuretic teas, carrot juice, coconut water and regular water. Thank you so much for this forum!
Tig said
Aug 20, 2016
Hi Sue,
You and your husband have every reason to be hopeful. It's proven, stop the virus and you stop the damage. Some of the issues may take longer to resolve than others, some may linger on, but his chances of improvement are without question. I would be very excited and will be surprised if you haven't seen a significant reduction in the LFT's. No guarantees, but I feel pretty good about it. He's on a great protocol. Knock out one thing at a time, if that's what it takes. Pretty soon that's all behind you.
Susie1 said
Aug 20, 2016
My husband started the Daklenza/Sovaldi combo just under 4 weeks ago. He will be going for bloodwork this week. So far, no side effects, just a bit of fatigue and some sleep issues (possibly unrelated). I'm hoping for improvement in LFT. The cirrhosis scares me, so praying that the his liver is on the mend. Would love to hear words of encouragement by any ex-cirrhotics!
I have around about 3 weeks of this combo left. I can honestly say at the beginning I was slightly concerned if it would bother my kidneys, as mine tend to be very sensitive to medications. I had constant kidney problems from puberty to young adulthood that was just part of body changes. I had it a couple of times so bad I couldn't walk. These meds have not bothered me at all. I have noticed I now wake up early everyday naturally, and around midnight I need to sleep. So I now need around 7 hrs sleep and feel great. Before the meds, I needed a lot of sleep, especially naps even though I'd had 9 hrs sleep that night. Once your husband is cured a lot of problems will regress. I can recommend cutting all sugar from his diet with the exception of natural sugars in fruit and if needed some honey etc. Sugar acts like alcohol on the liver and puts it under tremendous stress. I don't have much liver damage because I am female, youngish, and I have the protection of estrogen as I have not reached menopause. Sadly, men tend to progress much faster and incur much damage. I hope the next couple of months go as smoothly as it begun.
L
Hi Susie,
im sure you made the right decision to leave the riba out. The physical and emotional side effects are harsh. I hear what you say about reducing the strain on the liver through healthy life style. For me, giving up alcohol was huge and I haven't really got any further than that.
Also know my teeth are on their last shaky pegs but the idea of false ones just freaks me out.
im sure the rest of his treatment will be as uneventful as the first 4 weeks.
Take care,
Syd
Thank you so much Syd. I believe nutrition and lifestyle has a lot to do with it. If we take away some of the liver's workload, I believe it can heal. So over the last 15 years, we have no toxins in our home, use mostly organic whole food, juicing, exercise, meditation and use only natural personal care products. We are now incorporating chiropractic and some mind-body techniques (Body Code). We have also explored the dental connection to health issues. I work at a clinic where we use biological dentists to evaluate any issues that may be connected - such as an infected root canal on the liver meridian or subclinical bone infections. If the immune system is busy working on things in the mouth, it can effective work best throughout the body. So I do strongly believe the liver can heal. Just need to be encouraged regularly
We decided on the Sof/Dak because he was still on omeprazole and we just did not want to wait any longer. He is now off the omeprazole and on propanolol (beta blocker - low dose) to help with the portal hypertension. We felt intuitively that the Ribavirin would not be good for him - psychologically mainly. We are taking a gamble that the varices are getting better and feeling that 3x was too invasive. Treating the root cause felt like a better approach. Thank you for your support.
Hi Susie,
i did sof/ dac/RIBA for 12 weeks and then just Sof/dac for another 12. I too was a decompensated cirrhotic when I began treatment last Dec. I had ascites and grade 1 Varicess. (The spell check goes into overdrive when I input that v word so I'm giving up the tussle! )
i was undetected at week 8 and am waiting for final post 12 week bloods now. My ascites is minimal now, and at last count my bloods had come down towards normal but some still out of whack. before I began treatment I was exhausted, had cramps in my hands and calves, bleeding in my gums, no appetite, disturbed sleep Patterns and generalised pain in my legs and back. Most of those symptoms have gone now - not the pain unfortunately. I found RIBA very difficult but had no symptoms on just the oyher two.
it took forty years for my liver to get to that stage and it would be unrealistic to imagine that it's going to heal over night now. My specialist told me that most people's improve but for some reason a small percentage go on deteriorating. At the moment I feel like I might be in the majority.
Depression and infections have been a feature of my whole adult life and sometimes I feel like a dark cloud is lifting and the real, amazing, beautiful, scary world is Becoming visible.
I hope your husband's journey is similar.
Syd
Hi susie,
So glad to hear you and hubby got it started, that he is 4 weeks into sof/dac!
I can only agree with what tig said, you are doing all the right things. All this stuff IS scary and I know how much you two are seeking reassuring relief. It WILL come. Just getting the hcv treatment underway now, means you have come a long way already! You have already crossed some great hurdles. Good for you.
I am somehow missing info tho, is the length of the sof/dac 24 weeks? I assume it is. I remember there was talk of doing 24 weeks of harvoni originally, but then came the delays with varices banding and the possible interference of being on omeprazole. I recall you and he were not keen on adding riba to a regime. How did you and your doc finally decide on sof/dac?
He had 3 bandings, and no TIP, is that right? How do they feel the varices are now, and is he still on the omeprazole?
Glad you are not discerning any great side effects attributable to the sof/dak. Small blessings.
Things should start turning your way from now on. It's early days, but I still hope you might see some changes for the good in his labs to be done next week - that is always reassuring. You are on your way! Good going! BTW - he is a lucky guy to have you in his corner.
C.
Hiya Susie,
I'm not ex cirrhotic (yet)
but I am HVC free and my liver sure does work much better than it did before treatment.
My ALTs ALTs hovered between the 50's and the high 90's for over 30 years
4 weeks after I started treatment, they went into the teens where they remain.
my years of HCV caused me to have a number of nasty, confusing immune issues which are now less horrid to live with, I'm working on fixing my lymphatic system and I'm pretty confident that with care, my chirrosis will reverse eventually. The liver does regenerate.
Sounds like you are doing everything right with the hydration, nutrition...maybe foot/leg massage would help his swollen feet, I'm sure he won't mind trying
Let us know about his bloodwork
Alison
Thank You!! He still gets some swelling in his feet which scares me. When he does, he rests more, drinks a lot of diuretic teas, carrot juice, coconut water and regular water. Thank you so much for this forum!
Hi Sue,
You and your husband have every reason to be hopeful. It's proven, stop the virus and you stop the damage. Some of the issues may take longer to resolve than others, some may linger on, but his chances of improvement are without question. I would be very excited and will be surprised if you haven't seen a significant reduction in the LFT's. No guarantees, but I feel pretty good about it. He's on a great protocol. Knock out one thing at a time, if that's what it takes. Pretty soon that's all behind you.
My husband started the Daklenza/Sovaldi combo just under 4 weeks ago. He will be going for bloodwork this week. So far, no side effects, just a bit of fatigue and some sleep issues (possibly unrelated). I'm hoping for improvement in LFT. The cirrhosis scares me, so praying that the his liver is on the mend. Would love to hear words of encouragement by any ex-cirrhotics!
Sue