Hi Julie. Loopy Lisa brings up a good point- Did you take Ribavirin? If so was it 800 or 1200 daily?? Also- what geno type are you, how long do you think you have had HCV ? The side effects you report on Harvoni are all possible, however you are reporting the worst case of S/X I have ever heard of using Harvon. It will take some time to get back to normal. A little discomfort now beats the heck out of end stage liver failure! Look it up! RC
Loopy Lisa said
Jun 11, 2016
Hi,
Although it doesn't feel like it, that is great news! You are a step nearer to the end never having to worry again about the virus.
I guess you took Riba as part of your cure? That does take about 6 weeks to get out of your body so it is known to cause some disruption for some people. I'm riba intolerant as it worked too well on me, I reacted very strongly to it, and it caused all kinds of problems. But after 6 weeks all my symptoms were gone and I was back to pre-treatment status. I think if you eat well, drink plenty the effects will lesson over the weeks and you will feel much better again.
Please let us know how it goes, and what your final outcome. We are all excited by the DDA's as treatment is a lot shorter and a lot of people are recovering fantastically. Imagine how blessed your liver will be when damage starts to reverse on your liver!
Thinking of you. x
Pablito said
Jun 10, 2016
Undetectable at week 4. Hoot!!! That bodes very well for SVR12 so try and use this motivation to get through your transient (but uncomfortable) post-treatment side effects rather than worrying about a potential future treatment that you most probably won't need.
It took me a few months to get over my previous treatment with interferon/ribavirin, but feel better I did with time. Interferon/ribavirin is like using a sledge hammer to open a lock whereas the DAAs are an elegant toothpick, but ultimately these are a powerful toothpicks so it seems like your body needs time to heal...
...but heal you will. With time.
JulieL said
Jun 10, 2016
Hi everyone,
Thanks for your support. I dragged myself to a doctor in town and, like most country doctors here in Oz, he explained that there's nothing known about side-effects etc re ceasing Harvoni because it has only been available here since March. While he was a lovely doctor, I had to spell Harvoni for him and explain what it is So, he could find no reason for my back and hip pains but did prescribe a drug that eases the pain. At least my lungs are clear and he ordered blood tests to check on the Hep C.
On a positive note, I have started drinking 2 litres of water (with electrolytes added) a day and hitting the multi vitamins and vitamin C. Still fatigued and not sleeping but will see what happens. I just wish I had been more informed.
All I have ever been told is that I am genotype 1. I have no idea what my ALT. AST and Hemoglobin are or what they are? Before treatment, I was told by one Hep C nurse that my fibrosis scan showed borderline cirrhosis. Another nurse disagreed. I was then told that the machine wasn't reliable. It would appear that the medical profession is quick to prescribe without looking in to how debilitating the side effects can be.
I will just have to wait and see if the Harvoni has been successful. The Hep C was undetectable at 4 weeks so I guess that's a good sign. If the Hep C is still there, I wouldn't opt for further treatment as I doubt my body/mind would cope with another onslaught.
Thanks again everyone.
wendyo said
Jun 9, 2016
Hi Julie,
I agree with the fella's that this is not usual. Want to add we didn't get this sick overnight so it may take a bit of time to feel better. I know it is hard to be patient though. I am going to my new PCP tomorrow to get some tests done and things checked out that I believe are just new issues, getting older and not related to the treatment or HCV. So drink water and decaf beverages to continue to flush your system and see how you feel in 2 weeks. Let us know.........
wendy
Shadowfax said
Jun 8, 2016
Welcome Julie,
I too am surprised and sad that you are having these symptoms. They are for the most part unusual and hopefully transient. Keeping hydrated is important as is getting to a doctor to sort out these pains to see if there is any visible reason for them. Please keep us posted. We do want to hear from you.
SF
wmlj1960 said
Jun 8, 2016
I'm sorry you are having these issues Julie but I suggest giving this some time to work itself out before making a final call. Hep C is a killer and it takes strong medication to kill it. Some people have more side effects than others but even the ones that have a rougher time get better over time. I personally didn't experience any significant negative side effects during or after my 24 week Harvoni Tx but that's just me. I did suffer from joint pain but I also have arthritis so I can't blame that on the medicine. I've been fighting HIV for many years and my immune system is in poor condition so my doctors kept a close eye on me during treatment but I had no problem. Actually my viral load remained undetectable and my CD4 count increased throughout and continues to improve as of my last blood test in April. I wish you would have found this forum before now since there are several things that we can do during treatment to keep side effects at bay but that's 'water under the bridge' now. I would suggest staying adequately hydrated to help get the drugs out of your system and to help your body recover from many years of being beaten on by HCV. I hope and expect you'll start feeling better as time passes - one day at a time.
Pablito said
Jun 8, 2016
Hi Juliet
Welcome to the forum and congratulations on being undetected for far. To me this is really great news. As you'll know the longterm effects of HCV would have had you feeling worse than you feel now over time.
Your post-treament side effects are, as Tig points out, unusual but occasionally we've encountered a person who reports similar issues. There's a hundred and one reasons as to why you might feel the way you do, but if I felt ok-ish before treatment and then felt rubbish after treatment then I too would be attributing this to the medication, but causality is a complex issue.
Hang on in there and I'm sure these will be passing effects. I got some side-effects at the start of my treatment and I re-framed them as my body healing itself of HCV. A silly mind trick really, but it helped me.
Pablo
-- Edited by Pablito on Wednesday 8th of June 2016 06:06:28 PM
JimmyK said
Jun 8, 2016
JulieL wrote:
I have just finished a 3 months course of Harvoni. I experienced most of the side effects; nausea, headaches, fatigue and insomnia. But I hung in there. My 4 week bloods showed the virus is gone. Have not been able to find another specialist to get more bloods done.
Greetings,
Can you clarify some? You did the 12 week course, yet only had blood drawn at 4 weeks and that is it? Maybe I misunderstood.
Thanks and Welcome to The Forum.
JimmyK
Tig said
Jun 8, 2016
Hi Julie,
Welcome to the forum. I sorry to hear you're feeling so poorly. This is highly unusual, but we have others that have mentioned some problems right after they ended treatment. Primarily fatigue and some muscle and joint pain. You mentioned you're four weeks EOT or is that just 5 days and undetected? That's great to hear, but I'm sure it's disappointing to be experiencing all of this discomfort. Have you continued to stay hydrated? It's vital to continue the increased fluid intake, namely water and maintaining a good electrolyte intake. The headaches are a sure sign that you might be experiencing some dehydration.
Can you tell us a little bit more about yourself? Things like your genotype, post treatment labs, like your ALT. AST and Hemoglobin will tell us a lot. Do you know what your pre treatment fibrosis and viral load were? We place that in our signature line so we have a quick reference when replying.
Most people that I know with post treatment complaints do improve, but it can take time. We all hope for immediate results but rarely do we get them. It's difficult to say why some feel so good afterwards and some not so good.... Complaints of increased joint pain, may be an immune response that will correct itself in time. Best to get your doctors advice when you can get into town. Being in a rural location isn't very convenient.
Others will be along to welcome you and offer advice. If you need anything, please let me know.
PS: You will have to get your EOT +12 week viral load to determine treatment success.
-- Edited by Tig56 on Wednesday 8th of June 2016 05:42:48 PM
JulieL said
Jun 8, 2016
I have just finished a 3 months course of Harvoni. I experienced most of the side effects; nausea, headaches, fatigue and insomnia. But I hung in there. My 4 week bloods showed the virus is gone. Have not been able to find another specialist to get more bloods done. Have been off it for 5 days and feeling like I've been hit by a truck. The fatigue, depression, headaches, right back pain and hip pain are excruciating. I have to work so rest is impossible. Given how bad I am (none of this before Harvoni), I never would have opted for this treatment. My life was fine and I was managing the Hep C but was told harvoni was a miracle drug and I would feel fantastic after treatment (I had slight fatigue for 30 years). Nothing could be further from the truth. At this stage, I would reject any further treatment (based on this experience) if I discovered the virus had reactivated. I am angry that I was not warned of what can happen after a course of Harvoni and am only finding out now that it can completely ruin one's life. As I live on a remote property, I have to wait to see a doctor and, hopefully, these joint and back pains can be sorted. Also planning to take immune system boosters as I have now found out that one's immune system crashes after treatment. Not happy
Hi Julie. Loopy Lisa brings up a good point- Did you take Ribavirin? If so was it 800 or 1200 daily?? Also- what geno type are you, how long do you think you have had HCV ? The side effects you report on Harvoni are all possible, however you are reporting the worst case of S/X I have ever heard of using Harvon. It will take some time to get back to normal. A little discomfort now beats the heck out of end stage liver failure! Look it up! RC
Hi,
Although it doesn't feel like it, that is great news! You are a step nearer to the end never having to worry again about the virus.
I guess you took Riba as part of your cure? That does take about 6 weeks to get out of your body so it is known to cause some disruption for some people. I'm riba intolerant as it worked too well on me, I reacted very strongly to it, and it caused all kinds of problems. But after 6 weeks all my symptoms were gone and I was back to pre-treatment status. I think if you eat well, drink plenty the effects will lesson over the weeks and you will feel much better again.
Please let us know how it goes, and what your final outcome. We are all excited by the DDA's as treatment is a lot shorter and a lot of people are recovering fantastically. Imagine how blessed your liver will be when damage starts to reverse on your liver!
Thinking of you. x
Undetectable at week 4. Hoot!!! That bodes very well for SVR12 so try and use this motivation to get through your transient (but uncomfortable) post-treatment side effects rather than worrying about a potential future treatment that you most probably won't need.
It took me a few months to get over my previous treatment with interferon/ribavirin, but feel better I did with time. Interferon/ribavirin is like using a sledge hammer to open a lock whereas the DAAs are an elegant toothpick, but ultimately these are a powerful toothpicks so it seems like your body needs time to heal...
...but heal you will. With time.
Thanks for your support. I dragged myself to a doctor in town and, like most country doctors here in Oz, he explained that there's nothing known about side-effects etc re ceasing Harvoni because it has only been available here since March. While he was a lovely doctor, I had to spell Harvoni for him and explain what it is
On a positive note, I have started drinking 2 litres of water (with electrolytes added) a day and hitting the multi vitamins and vitamin C. Still fatigued and not sleeping but will see what happens. I just wish I had been more informed.
All I have ever been told is that I am genotype 1. I have no idea what my ALT. AST and Hemoglobin are or what they are? Before treatment, I was told by one Hep C nurse that my fibrosis scan showed borderline cirrhosis. Another nurse disagreed. I was then told that the machine wasn't reliable. It would appear that the medical profession is quick to prescribe without looking in to how debilitating the side effects can be.
I will just have to wait and see if the Harvoni has been successful. The Hep C was undetectable at 4 weeks so I guess that's a good sign. If the Hep C is still there, I wouldn't opt for further treatment as I doubt my body/mind would cope with another onslaught.
Thanks again everyone.
Hi Julie,
I agree with the fella's that this is not usual. Want to add we didn't get this sick overnight so it may take a bit of time to feel better. I know it is hard to be patient though. I am going to my new PCP tomorrow to get some tests done and things checked out that I believe are just new issues, getting older and not related to the treatment or HCV. So drink water and decaf beverages to continue to flush your system and see how you feel in 2 weeks. Let us know.........
wendy
Welcome Julie,
I too am surprised and sad that you are having these symptoms. They are for the most part unusual and hopefully transient. Keeping hydrated is important as is getting to a doctor to sort out these pains to see if there is any visible reason for them. Please keep us posted. We do want to hear from you.
SF
I'm sorry you are having these issues Julie but I suggest giving this some time to work itself out before making a final call. Hep C is a killer and it takes strong medication to kill it. Some people have more side effects than others but even the ones that have a rougher time get better over time. I personally didn't experience any significant negative side effects during or after my 24 week Harvoni Tx but that's just me. I did suffer from joint pain but I also have arthritis so I can't blame that on the medicine. I've been fighting HIV for many years and my immune system is in poor condition so my doctors kept a close eye on me during treatment but I had no problem. Actually my viral load remained undetectable and my CD4 count increased throughout and continues to improve as of my last blood test in April.
I wish you would have found this forum before now since there are several things that we can do during treatment to keep side effects at bay but that's 'water under the bridge' now. I would suggest staying adequately hydrated to help get the drugs out of your system and to help your body recover from many years of being beaten on by HCV.
I hope and expect you'll start feeling better as time passes - one day at a time.
Hi Juliet
Welcome to the forum and congratulations on being undetected for far. To me this is really great news. As you'll know the longterm effects of HCV would have had you feeling worse than you feel now over time.
Your post-treament side effects are, as Tig points out, unusual but occasionally we've encountered a person who reports similar issues. There's a hundred and one reasons as to why you might feel the way you do, but if I felt ok-ish before treatment and then felt rubbish after treatment then I too would be attributing this to the medication, but causality is a complex issue.
Hang on in there and I'm sure these will be passing effects. I got some side-effects at the start of my treatment and I re-framed them as my body healing itself of HCV. A silly mind trick really, but it helped me.
Pablo
-- Edited by Pablito on Wednesday 8th of June 2016 06:06:28 PM
Greetings,
Can you clarify some? You did the 12 week course, yet only had blood drawn at 4 weeks and that is it? Maybe I misunderstood.
Thanks and Welcome to The Forum.
JimmyK
Hi Julie,
Welcome to the forum. I sorry to hear you're feeling so poorly. This is highly unusual, but we have others that have mentioned some problems right after they ended treatment. Primarily fatigue and some muscle and joint pain. You mentioned you're four weeks EOT or is that just 5 days and undetected? That's great to hear, but I'm sure it's disappointing to be experiencing all of this discomfort. Have you continued to stay hydrated? It's vital to continue the increased fluid intake, namely water and maintaining a good electrolyte intake. The headaches are a sure sign that you might be experiencing some dehydration.
Can you tell us a little bit more about yourself? Things like your genotype, post treatment labs, like your ALT. AST and Hemoglobin will tell us a lot. Do you know what your pre treatment fibrosis and viral load were? We place that in our signature line so we have a quick reference when replying.
Most people that I know with post treatment complaints do improve, but it can take time. We all hope for immediate results but rarely do we get them. It's difficult to say why some feel so good afterwards and some not so good.... Complaints of increased joint pain, may be an immune response that will correct itself in time. Best to get your doctors advice when you can get into town. Being in a rural location isn't very convenient.
Others will be along to welcome you and offer advice. If you need anything, please let me know.
PS: You will have to get your EOT +12 week viral load to determine treatment success.
-- Edited by Tig56 on Wednesday 8th of June 2016 05:42:48 PM
I have just finished a 3 months course of Harvoni. I experienced most of the side effects; nausea, headaches, fatigue and insomnia. But I hung in there. My 4 week bloods showed the virus is gone. Have not been able to find another specialist to get more bloods done. Have been off it for 5 days and feeling like I've been hit by a truck. The fatigue, depression, headaches, right back pain and hip pain are excruciating. I have to work so rest is impossible. Given how bad I am (none of this before Harvoni), I never would have opted for this treatment. My life was fine and I was managing the Hep C but was told harvoni was a miracle drug and I would feel fantastic after treatment (I had slight fatigue for 30 years). Nothing could be further from the truth. At this stage, I would reject any further treatment (based on this experience) if I discovered the virus had reactivated. I am angry that I was not warned of what can happen after a course of Harvoni and am only finding out now that it can completely ruin one's life. As I live on a remote property, I have to wait to see a doctor and, hopefully, these joint and back pains can be sorted. Also planning to take immune system boosters as I have now found out that one's immune system crashes after treatment. Not happy