I am so happy to have read your post. I am currently 2 weeks post S/O treatment and starting to feel more lethargic and cloudy headed. I have been worried about relapse as well. My next VL test is on Sept 16th so I hope everything is fine. You just made me feel better though.
thanks,
T
Tig said
Sep 4, 2014
Hi Peter,
Thanks for the informative update! I'm thrilled that you finished Tx and maintained your undetectable status. There are many reasons that may be responsible for your increased fatigue and I know after having had this disease for decades, the first thought goes to the thought of relapse. Try and put that thought out of your mind and wait for that new test result. Chances are better that you're just fine and it's your body adjusting to your new lifestyle. All that exercise and new diet could be responsible! Finding that extra energy is a blessing but can wear you out.
Your family trip soundEd like a wonderful time for your entire family! Thanks for sharing that happy bit of news with us. I'd love to be able to do something like that, consider yourself fortunate. I wish you and your Mom all the best! Good luck on your test results. Please let us know what you hear.
Tig
Peter M said
Sep 3, 2014
Hi All,
I've been posting here and there for a while and never dropped by here to say hi. Soooo....hi!
I probably acquired Hepatitis C sometime in the late 1960s. I was diagnosed in 1989 and my gastroenterologist, after a biopsy, said I should stop drinking and then forget about it as it would never develop into anything to worry about. I was fine until about 2001 when a blood test picked up a VL over 8,000,000 and enzyme levels in the 500s! A second biopsy showed bridging fibrosis (satge 3) and I gradually developed extreme and disabling fatigue. I could no longer do my job and had to stop work as a community college faculty and go on disability. By 2008 another biopsy showed cirrhosis.
I started seeing a naturopath in 2002 who specialized in liver diseases and working with him changed my lifestyle. I switched my diet, my sleeping habits, my exercise habits, and started taking liver friendly supplements. The fatigue never went away and my platelets started a slow slide into the 70-90 range. I also started seeing a hepatologist at OHSU for monitoring and consulting.
Because of fear and a strong family history of depression and suicide on both sides of my family tree I stayed away from Interferon-based treatments. I just held on and hoped an interferon-free treatment would come along.
As you all know, Sovaldi and Olysio were approved in December of last year and it became available in combination as an off-label prescription. Thanks to my hepatologist ,Atif Zaman MD, and my treatment nurse Karista Peabody and my pharmacist Shelley Baily from Central Drugs I was able to secure the S/O treatment that started for me in early April. I wanted to be done with treatment in time to go on a family cruise in Porugal with 13 members of my family and my 84 year old mom who is fighting brain cancer.
Almost Immediately after starting treatment I started to feel better and by week two or three felt better than I had in years. I suffered almost no side effects...maybe a little insomnia at first. By the end of the treatment I had almost all my energy back and the crippling fatigue was pretty much gone. I was und at eot and again at week 4 eot.
The trip to Portugal was great. It was probably my mom's last family outing (we've been taking a yearly family trip since the 1970s) and we all rallied to show her a good time. She was especially glad to see me with energy as I had been fading over the past decade.
I have noticed some after treatment side effects involving stiffness, especially in arising from a seated position. I also have developed a sharp intermittent shooting pain in my neck. I also developed a ravenous appetite which has stayed with me, probably due to increased energy and metabolism.
Also about six days ago my fatigue and brain fog came back and have stayed with me. Naturally I became scared that the virus was back. My naturopath didn't think so. He thought that the fatigue was due to my cutting back on calories (which I was doing to lose the five pounds I gained on the cruise). Anyway I called Karista and she got Dr. Zaman to agree to an 8 week eot cbc, comp met, and VL. I had my blood drawn today and will get the VL result early next week. The Comp Met results came in today and my AST and ALT are still in the normal range which is a big relief.
Anyway...that's my story. I apologize for my wordiness..it seems to be a genetic trait
Peter,
I am so happy to have read your post. I am currently 2 weeks post S/O treatment and starting to feel more lethargic and cloudy headed. I have been worried about relapse as well. My next VL test is on Sept 16th so I hope everything is fine. You just made me feel better though.
thanks,
T
Hi Peter,
Thanks for the informative update! I'm thrilled that you finished Tx and maintained your undetectable status. There are many reasons that may be responsible for your increased fatigue and I know after having had this disease for decades, the first thought goes to the thought of relapse. Try and put that thought out of your mind and wait for that new test result. Chances are better that you're just fine and it's your body adjusting to your new lifestyle. All that exercise and new diet could be responsible! Finding that extra energy is a blessing but can wear you out.
Your family trip soundEd like a wonderful time for your entire family! Thanks for sharing that happy bit of news with us. I'd love to be able to do something like that, consider yourself fortunate. I wish you and your Mom all the best! Good luck on your test results. Please let us know what you hear.
Tig
Hi All,
I've been posting here and there for a while and never dropped by here to say hi. Soooo....hi!
I probably acquired Hepatitis C sometime in the late 1960s. I was diagnosed in 1989 and my gastroenterologist, after a biopsy, said I should stop drinking and then forget about it as it would never develop into anything to worry about. I was fine until about 2001 when a blood test picked up a VL over 8,000,000 and enzyme levels in the 500s! A second biopsy showed bridging fibrosis (satge 3) and I gradually developed extreme and disabling fatigue. I could no longer do my job and had to stop work as a community college faculty and go on disability. By 2008 another biopsy showed cirrhosis.
I started seeing a naturopath in 2002 who specialized in liver diseases and working with him changed my lifestyle. I switched my diet, my sleeping habits, my exercise habits, and started taking liver friendly supplements. The fatigue never went away and my platelets started a slow slide into the 70-90 range. I also started seeing a hepatologist at OHSU for monitoring and consulting.
Because of fear and a strong family history of depression and suicide on both sides of my family tree I stayed away from Interferon-based treatments. I just held on and hoped an interferon-free treatment would come along.
As you all know, Sovaldi and Olysio were approved in December of last year and it became available in combination as an off-label prescription. Thanks to my hepatologist ,Atif Zaman MD, and my treatment nurse Karista Peabody and my pharmacist Shelley Baily from Central Drugs I was able to secure the S/O treatment that started for me in early April. I wanted to be done with treatment in time to go on a family cruise in Porugal with 13 members of my family and my 84 year old mom who is fighting brain cancer.
Almost Immediately after starting treatment I started to feel better and by week two or three felt better than I had in years. I suffered almost no side effects...maybe a little insomnia at first. By the end of the treatment I had almost all my energy back and the crippling fatigue was pretty much gone. I was und at eot and again at week 4 eot.
The trip to Portugal was great. It was probably my mom's last family outing (we've been taking a yearly family trip since the 1970s) and we all rallied to show her a good time. She was especially glad to see me with energy as I had been fading over the past decade.
I have noticed some after treatment side effects involving stiffness, especially in arising from a seated position. I also have developed a sharp intermittent shooting pain in my neck. I also developed a ravenous appetite which has stayed with me, probably due to increased energy and metabolism.
Also about six days ago my fatigue and brain fog came back and have stayed with me. Naturally I became scared that the virus was back. My naturopath didn't think so. He thought that the fatigue was due to my cutting back on calories (which I was doing to lose the five pounds I gained on the cruise). Anyway I called Karista and she got Dr. Zaman to agree to an 8 week eot cbc, comp met, and VL. I had my blood drawn today and will get the VL result early next week. The Comp Met results came in today and my AST and ALT are still in the normal range which is a big relief.
Anyway...that's my story. I apologize for my wordiness..it seems to be a genetic trait
Cheers!