I am going for 6 week eot test tuesday - anybody hear of 1a responses? Taz I am on your schedule!
TazKat said
Jul 24, 2014
keep chin up groupergetter.. we here for u!! u have been here for us.. I am praying for u! there is too much stuff out there now. just got to find the right one. hopefully mine will be svr in 12 more weeks. chin UP!!
Taz
TazKat said
Jul 24, 2014
appt tmorrow with doc. will look at the labs on her screen & get her to show me the words undetected.. (lol)
then onward til sometime oct for the 12 week post tx lab..
So everyone that might be discouraged, look up.. I have to keep that in mind all the time. i am really hoping the word cure i will hear in oct. then realize that knowing for 14 yrs that i had hep c, that now i can focus on life without hep c.. gonna take some getting used to.. but i think i will do good at it again..
Peace ougt
Taz
Dzdayscomin said
Jul 10, 2014
Groupergetter wrote:
Duane, I relapsed on the Sovaldi/Olysio 4 weeks eot. Yes discouraging, but still Thankful for each day. While excited and happy for all those reaching SVR, disappointing to be left behind.... again. Odd the first day I took this combo I could definitely feel the virus being killed. Hadn't really felt much diffence after eot until today. The dragon has returned.
So sorry to hear that, I really hope you get the new treatment this fall and beat this thing, and I hope in August I do not find myself in the same situation.
Hang in there and stay positive..........I know it's easier said than done !
Duane
thepoet said
Jul 7, 2014
Hey guys,
I'm into week 10 of Sovaldi/Riba. I reached UNDETECTED at week 9. When first I started treatment...I had such renewed energy...no more knee pain, in fact I started feeling like I was 30 instead of 56. My skin began to look alive and sparkle again as well. However now, my knees are hurting again, my lower back is sore and my feet hurt like the dickens. I am so happy that last night I got about 7 hours of sleep. Usually, I only get 5 -6 hours. I began taking all of my meds at 8am so the insomnia wouldn't be so intense. I was only sleeping about 2-3 hours a night when I took my riba twice a day. Now I wake up in the middle of the night to go to the bathroom and I become wide awake. What I did last night was to listen to some relaxation music...raining and ocean sounds. 7 hours of sleep makes a big difference. I don't want to take ambien or lunesta because they make me crazy. No matter the aches and pains I feel, it is still better than the old riba/interferon treatment, at least I'm not fainting. I can deal with these sides one day at a time, just as I deal with other challenges in life. I pray to Jesus for strength and keep it moving. Keep the faith!
Groupergetter said
Jul 7, 2014
Duane, I relapsed on the Sovaldi/Olysio 4 weeks eot. Yes discouraging, but still Thankful for each day. While excited and happy for all those reaching SVR, disappointing to be left behind.... again. Odd the first day I took this combo I could definitely feel the virus being killed. Hadn't really felt much diffence after eot until today. The dragon has returned.
Dzdayscomin said
Jul 5, 2014
As most know I've not had to undergo the interferon or riba drugs which I'm sure is a blessing, but if I sit for 20-30 min. I'm like a 80 yr old getting up and moving.
I really think its the ESLD that has more to do with it than any Hep C treatment drugs.
I'd really love to just wake up one day and get out of bed without every step being a painful experience, but a painful living step is better than not being able to get up at all.
Like I said 29 yrs before knowing I had an issue with this took its toll, not sure there is ever any going back to what life was like, I was an athlete in HS and coached hockey for 20 plus yrs and now there is no way I could even do a lap or two around the rink, but we play the hand we are dealt.
Hope others are not as far compromised so they beat this and live on able to have fun and enjoy each day !
Duane
Tig said
Jul 5, 2014
I'm approaching my 8th month EOT. I noticed a very renewed sense of motivation and vigor soon after I finished treatment. I also noticed some improvement just before my EOT date and was surprised because of the amount of anemia I was dealing with. I was hopeful that it was a sign of a successful course of treatment. What I've began to experience more and more of, is similar to what several here are experiencing and that's significant joint pain and increased signs of arthritis. I've seen several specialists since EOT and it's amazing how many doctors have absolutely no knowledge of available HCV treatment protocols, outside of Interferon, unless those specialists are Gastroenterologists or Hepatologists. With no personal history of arthritis, and no reason for the recent increase in my symptoms, both my Hepas, the Orthopedic specialists and my PCP's have all come to the conclusion that my recent arthritic symptoms are Interferon related. The decisions thus far seem to be a wait and see sort of thing. I'm hoping there isn't some form of immune system response that will result in this worsening. But it does seem apparent that there is more and more reactions of this nature, specifically in the Interferon groups. Be sure you share these issues and symptoms with your health care team, regardless of protocol. The only way these kinds of things are accurately documented for future reference's sake, is if you let them know when simple aches and pains become severe in nature.
Tig
Huey said
Jul 5, 2014
On Ribavirin box #20 and have four more left, My Tx has had mostly fatigue problems, All I do is sleep. As for the rest of it, My gallbladder is the only thing else that is bothering me. The virus is gone these next four box's is the cherry on top, I have had a lot of sundays and I never turn down the cherry, and I am not going to start now.
Fireman Rob said
Jul 5, 2014
Duane,
I'm four weeks in on this tx and my joints and muscles are sore constantly. It's definitely the meds as I've never had this issue before. I'm 32 and have noticed a huge difference in mobility and physical capabilities since starting the regimen. This may ease your mind a bit?
-Rob
Dzdayscomin said
Jul 5, 2014
I also feel darn near arthritic in the mornings it takes a good while and a hot shower to to get loose enough to get moving, I don't know if it's at all related to tx or just long term damage from having the internal chemistry set broken for so long.
I sure wish I could wake up and jump out of bed ready to go, but if I did that I think I'd be a heap of bones on the carpet !
I feel great mentally, but physically for 53 years old I've got some real problems I fear! It may still be a transplant that fixes all that? But who knows ? I think it may be a real struggle until the literal end one way or the other...if I didn't have pain meds I wouldn't be able to do a whole lot....but if ya take that then you can do things, but the price is always going to have to be paid...and that's usually next day or two.
Unfortunately I am one of those that never knew I had the dragon until it was way way to late.
I pray others don't have to live my journey it's just no fun at all.
But I am blessed and grateful for all I have...and those that support and care even when they have absolutely have no reason too!
Thanks to all!
Duane
OldenSlow said
Jul 4, 2014
Hey JB,
I'm 7 weeks post today and still adjusting to things. Wasn't on your protocol but finding that it's taking some time to come around. Things are back to normal in many ways and energy is good, but physically it's still a bit of a struggle. Had unusual cramping issues (mostly legs and feet) on tx despite staying hydrated and that persisted for awhile and has led to a couple of pulled muscles. Anyway, still kind of creaky and I directly attribute it to the time spent on tx. I think the whole treatment adventure can prove quite a shock to the system, even if side effects are more or less minimal.
I'm always nervous as hell awaiting lab results. I don't think we have anyway around that one.
wayne
beingsassy said
Jul 4, 2014
I'm still UND 4 weeks after tx of 12 weeks RIBA and sovaldi. Still have fatigue. I did some research and side effects from RIBA can last 3-6 months post tx. So, I'm trying green tea with rishi mushroom to see if it helps. My order should arrive and then I'll see. It's supposed to help with immunity and energy. But I know side effects will disappear. Not having any other problems other than fatigue. Hope that helps.
JLynch30 said
Jul 3, 2014
me too I went from on the couch to manic - concentration levels are way down - but it is good to have energy
JLynch30 said
Jul 3, 2014
Yes agreed - I ahve only heard 3 people in other chats say relapse and only one was the inter/solv/rib and she stopped early
Fireman Rob said
Jul 3, 2014
Taz is correct, there have been two on this S/O combo that have relapsed. I'm sure your post Tx sfx are exactly what you say Jimbob, just coming off the meds. I wish we knew for sure what is likely to happen and when. It's rather unnerving considering my doc doesn't seem to know what the Q80K even is for Genotype 1's.
Everything indicates a successful outcome with this combo, and the odds are likely in your favor for everyone using Sovaldi in any combo. If we relapse, there's still plenty of hope coming in October and thereafter.
Good Luck Everyone!
TazKat said
Jul 3, 2014
jimbob, that is problay that the stuff is working its way out of system. we have to focus on the good news.
jimbob said
Jul 3, 2014
Just did my post 4 week EOT labs last Monday but won't have results til early next week. I'm a little bit nervous. I'm having some post tx sx that are different,but I'm just assuming it's a physical reaction to coming off the meds.
TazKat said
Jul 3, 2014
I heard about 2 but they were using the olysis (sp) with theirs. I am not. so..... just don't know.. my hepa thinks good of it.. so lets hope he is right about ole Taz..
JLynch30 said
Jul 2, 2014
Anyone hearing relapse stories? Iread a few - the numbers are starting to come in from us 12 week treatment folk.
I am going for 6 week eot test tuesday - anybody hear of 1a responses? Taz I am on your schedule!
keep chin up groupergetter.. we here for u!! u have been here for us.. I am praying for u! there is too much stuff out there now. just got to find the right one. hopefully mine will be svr in 12 more weeks. chin UP!!
Taz
appt tmorrow with doc. will look at the labs on her screen & get her to show me the words undetected.. (lol)
then onward til sometime oct for the 12 week post tx lab..
So everyone that might be discouraged, look up.. I have to keep that in mind all the time. i am really hoping the word cure i will hear in oct. then realize that knowing for 14 yrs that i had hep c, that now i can focus on life without hep c.. gonna take some getting used to.. but i think i will do good at it again..
Peace ougt
Taz
So sorry to hear that, I really hope you get the new treatment this fall and beat this thing, and I hope in August I do not find myself in the same situation.
Hang in there and stay positive..........I know it's easier said than done !
Duane
Hey guys,
I'm into week 10 of Sovaldi/Riba. I reached UNDETECTED at week 9. When first I started treatment...I had such renewed energy...no more knee pain, in fact I started feeling like I was 30 instead of 56. My skin began to look alive and sparkle again as well. However now, my knees are hurting again, my lower back is sore and my feet hurt like the dickens. I am so happy that last night I got about 7 hours of sleep. Usually, I only get 5 -6 hours. I began taking all of my meds at 8am so the insomnia wouldn't be so intense. I was only sleeping about 2-3 hours a night when I took my riba twice a day. Now I wake up in the middle of the night to go to the bathroom and I become wide awake. What I did last night was to listen to some relaxation music...raining and ocean sounds. 7 hours of sleep makes a big difference. I don't want to take ambien or lunesta because they make me crazy. No matter the aches and pains I feel, it is still better than the old riba/interferon treatment, at least I'm not fainting. I can deal with these sides one day at a time, just as I deal with other challenges in life. I pray to Jesus for strength and keep it moving. Keep the faith!
Duane, I relapsed on the Sovaldi/Olysio 4 weeks eot. Yes discouraging, but still Thankful for each day. While excited and happy for all those reaching SVR, disappointing to be left behind.... again. Odd the first day I took this combo I could definitely feel the virus being killed. Hadn't really felt much diffence after eot until today. The dragon has returned.
As most know I've not had to undergo the interferon or riba drugs which I'm sure is a blessing, but if I sit for 20-30 min. I'm like a 80 yr old getting up and moving.
I really think its the ESLD that has more to do with it than any Hep C treatment drugs.
I'd really love to just wake up one day and get out of bed without every step being a painful experience, but a painful living step is better than not being able to get up at all.
Like I said 29 yrs before knowing I had an issue with this took its toll, not sure there is ever any going back to what life was like, I was an athlete in HS and coached hockey for 20 plus yrs and now there is no way I could even do a lap or two around the rink, but we play the hand we are dealt.
Hope others are not as far compromised so they beat this and live on able to have fun and enjoy each day !
Duane
I'm approaching my 8th month EOT. I noticed a very renewed sense of motivation and vigor soon after I finished treatment. I also noticed some improvement just before my EOT date and was surprised because of the amount of anemia I was dealing with. I was hopeful that it was a sign of a successful course of treatment. What I've began to experience more and more of, is similar to what several here are experiencing and that's significant joint pain and increased signs of arthritis. I've seen several specialists since EOT and it's amazing how many doctors have absolutely no knowledge of available HCV treatment protocols, outside of Interferon, unless those specialists are Gastroenterologists or Hepatologists. With no personal history of arthritis, and no reason for the recent increase in my symptoms, both my Hepas, the Orthopedic specialists and my PCP's have all come to the conclusion that my recent arthritic symptoms are Interferon related. The decisions thus far seem to be a wait and see sort of thing. I'm hoping there isn't some form of immune system response that will result in this worsening. But it does seem apparent that there is more and more reactions of this nature, specifically in the Interferon groups. Be sure you share these issues and symptoms with your health care team, regardless of protocol. The only way these kinds of things are accurately documented for future reference's sake, is if you let them know when simple aches and pains become severe in nature.
Tig
On Ribavirin box #20 and have four more left, My Tx has had mostly fatigue problems, All I do is sleep. As for the rest of it, My gallbladder is the only thing else that is bothering me. The virus is gone these next four box's is the cherry on top, I have had a lot of sundays and I never turn down the cherry, and I am not going to start now.
Duane,
I'm four weeks in on this tx and my joints and muscles are sore constantly. It's definitely the meds as I've never had this issue before. I'm 32 and have noticed a huge difference in mobility and physical capabilities since starting the regimen. This may ease your mind a bit?
-Rob
I also feel darn near arthritic in the mornings it takes a good while and a hot shower to to get loose enough to get moving, I don't know if it's at all related to tx or just long term damage from having the internal chemistry set broken for so long.
I sure wish I could wake up and jump out of bed ready to go, but if I did that I think I'd be a heap of bones on the carpet !
I feel great mentally, but physically for 53 years old I've got some real problems I fear! It may still be a transplant that fixes all that? But who knows ? I think it may be a real struggle until the literal end one way or the other...if I didn't have pain meds I wouldn't be able to do a whole lot....but if ya take that then you can do things, but the price is always going to have to be paid...and that's usually next day or two.
Unfortunately I am one of those that never knew I had the dragon until it was way way to late.
I pray others don't have to live my journey it's just no fun at all.
But I am blessed and grateful for all I have...and those that support and care even when they have absolutely have no reason too!
Thanks to all!
Duane
Hey JB,
I'm 7 weeks post today and still adjusting to things. Wasn't on your protocol but finding that it's taking some time to come around. Things are back to normal in many ways and energy is good, but physically it's still a bit of a struggle. Had unusual cramping issues (mostly legs and feet) on tx despite staying hydrated and that persisted for awhile and has led to a couple of pulled muscles. Anyway, still kind of creaky and I directly attribute it to the time spent on tx. I think the whole treatment adventure can prove quite a shock to the system, even if side effects are more or less minimal.
I'm always nervous as hell awaiting lab results. I don't think we have anyway around that one.
wayne
I'm still UND 4 weeks after tx of 12 weeks RIBA and sovaldi. Still have fatigue. I did some research and side effects from RIBA can last 3-6 months post tx. So, I'm trying green tea with rishi mushroom to see if it helps. My order should arrive and then I'll see. It's supposed to help with immunity and energy. But I know side effects will disappear. Not having any other problems other than fatigue. Hope that helps.
me too I went from on the couch to manic - concentration levels are way down - but it is good to have energy
Yes agreed - I ahve only heard 3 people in other chats say relapse and only one was the inter/solv/rib and she stopped early
Taz is correct, there have been two on this S/O combo that have relapsed. I'm sure your post Tx sfx are exactly what you say Jimbob, just coming off the meds. I wish we knew for sure what is likely to happen and when. It's rather unnerving considering my doc doesn't seem to know what the Q80K even is for Genotype 1's.
Everything indicates a successful outcome with this combo, and the odds are likely in your favor for everyone using Sovaldi in any combo. If we relapse, there's still plenty of hope coming in October and thereafter.
Good Luck Everyone!
jimbob, that is problay that the stuff is working its way out of system.
we have to focus on the good news.
I heard about 2 but they were using the olysis (sp) with theirs. I am not. so..... just don't know.. my hepa thinks good of it.. so lets hope he is right about ole Taz..
Anyone hearing relapse stories? Iread a few - the numbers are starting to come in from us 12 week treatment folk.