Its good to hear from you again, better to hear the great SVR news. I always wondered what happened to you because you has similar high Bilirubin issues that I had during our Abbvie trial. I thought that it might be part of the reason why I might have relapsed but I guess not.
I'm very happy for all 92% that made SVR that were in the trial, but as for us 8% that never acheived SVR its been hell to try to figure out what happen and where to go from here.
Enjoy the rest of your HepC free life
matt
Tig said
Feb 2, 2014
Congratulations Alan!! I wish you the very best of luck going forward!
Tig
Cinnamon Girl said
Feb 2, 2014
Hi Alan, good to see you back! Congratulations on your SVR, what wonderful news!
You`re right that participating in any clinical trial comes with certain risks and we are grateful to all of you who do this, you are our pioneers leading the way!
Thanks for sharing your progress with us, and for your encouraging news...very good to hear!
Ps - Alan, I see that you were originally registered under a different user name, `Freshhope`, so I have joined your threads together so we can follow your previous posts.
findingthecure said
Feb 2, 2014
Hi Everyone,
It's been awhile since I've been on this forum. Life got very busy! I'm glad to announce that I achieved SVR on the Abbvie drugs and I'm still clear. I think we need to help those behind us as the latest results are very promising although I realize that not everyone was successful in beating this.
Coming in as a cirrhotic, I was very nervous about how I would react to the drugs and whether I would clear as there was no data on this at the start of the trial. However, it was definitely worth it even though there were some side effects. Looking back, the biggest challenge for me was insomnia compounded by fatigue caused by the ribavirin (which affects the red blood cell count).
I did have headaches in the beginning but in my case, the headaches only lasted a couple of weeks and were never intense. I also had nausea a couple of times but only when I took the medication without food. I got a pretty bad head cold right after I started treatment which made me wonder if the drugs hit my immune system, but it's impossible to know.
As of now, my liver enzymes are normal, my platelets are slowly climbing back and my RBC count has jumped back to normal.
I do expect to see myself in the final results once they are released as I have Gilbert's which affects how I deal with bilirubin. My bilirubin stayed very high during the treatment and caused some concern, but in the end it was never serious.
I'm glad I did this trial even though every trial is a risk. For me, the side effects were manageable and I still have to pinch myself to believe that I'm finally rid of this disease. All the best to the rest of you who are either dealing with Hep C or putting your lives back together after achieving a cure.
Alan
I'm rooting for all those who have just found out they have this and are looking for a way forward. The last year has brought great opportunities for them and I'm thrilled at how things have turned around in such a short time.
Freshhope said
Apr 29, 2013
I had a sudden wave of nausea today and had to bow before the little white throne in my bathroom to get rid of lunch. Nasty, but I seem fine tonight. My wife jokes that I'm pregnant. I feel fatigued, I have mood swings and now I'm nauseous! All part of the journey. The only baby i want is one that's undetectable! Alan
-- Edited by Freshhope on Tuesday 30th of April 2013 04:08:11 AM
Freshhope said
Apr 27, 2013
Week 6 results. Still undetectable!
It also looks like my bilirubin is holding and even went down a little to 3.9.
I'm feeling good but still suffer from occasional headaches and some fatigue due to insomnia. Just glad to be beating this thing.
All the best to the rest of you.
Alan
Freshhope said
Apr 20, 2013
Just finished week 6. It was great to see in print the results from week 4. "HCV RNA not detected." Such simple but such sweet words!
I feel so much better than at the beginning of the treatment, although I'm struggling with some insomnia. I tried melatonin but it didn't seem to make a difference. However my energy levels are still improved and I no longer feel that mind fog that I had at the beginning of the treatment. I also don't experience the headaches as intensely, but it seems to come and go/ The only negative news was a mild rash that has developed on my forehead, probalby as a result of the riba. The doctor gave me a topical cream and warned that it speeds up the replacement of skin cells so that part of my face will be less tanned and may look a different color. We'll see what happens. I'm still struggling with high bilirubin related to my Gilbert's and the effect of some of the drugs on my bilirubin levels. I'm likely to have to take weekly tests to monitor my levels and hopefully I can finish the course of treatment
All the best to the rest of you out there, especially those doing treatments much harsher than what I am going through.
Bilirubin at 4.3; ALT 24; AST 24; HGB 13.5; RBC 4.3 (a little low); WBC 6.08; Platelets 156000.
One question, does anyone else suffer from aching legs? It's not so much restless leg syndrome (I had a good chuckle at the remedies suggested for that one ) as just aching and sometimes preventing me from getting back to sleep.
Alan
Matt Chris said
Apr 19, 2013
Hey Alan
Good to hear that you are settling in with the Meds, it seems to come and go for me but most days I lose focus and tire about about 6-7:00 PM.
Your body might be adapting to the Meds and correctly transporting more of your Billirubin out of liver as bile via the bile ducts then into the intestines, that seems to go up and down for me as well, but keeping top of your numbers weekly is a good course and remembering which foods if any that make you feel better or worse.
I'm finishing my ninth week on the same trial ,and all is well. BTW Are you on the 12 week or the 24 week group?
Alan I am including the chart below to keep your confidence up in between your 2 week visits, this Trail was Phase II but did not include the ABT-267
Keep the faith
Matt
Keep listening to what your body is saying
-- Edited by Matt Chris on Saturday 20th of April 2013 03:08:09 AM
Know your pain brother been there, I'm in I'm out its very stressful.
Know your feeling of Joy and relief, anyway congrats on the UND it's a great word.
Matt
Freshhope said
Apr 12, 2013
What a roller-coaster week. First the research nurse left a message that there was a problem with my lab work and I needed to call them right away. Then when I called in, I found my bilirubin was up and they were worried. I went to get new lab results and it came back just as I feared. My bilirubin was over 5 and they were considering dropping me from the trial. I was so frustrated. I had worked so hard to get to this point and now it would all be for nothing.
I woke up early the next morning, prayed and felt more at peace. I then wrote a letter explaining how much better I was feeling than when I had first started the treatment and asking them to allow me to continue in the trial. I went to work and tried to put it out of my mind. Then my wife called. "The nurse called," she paused as I waited to find out my dreams were about to be shattered. "You're back in the trial ... " and I breathed a sigh of relief, "and you're ..." she tried to drag it out but she couldn't hold back her excitement, "you're undetectable!"
I'm still struggling to understand what that means, but many of you know and you understand why we cry or feel numb. For now, I'm grateful and planning on continuing the journey. I still have the risk of my bilirubin climbing, but I'll face that battle when it comes.
Alan
Freshhope said
Mar 31, 2013
Matt,
Glad to hear you are on the same trial. My labs came back with my viral load at < 25, which was good news but not UND yet. I was a little disappointed after the huge drop in week 1, but I realize this is a process and I have to give my body time to beat this disease. My billirubin also dropped to 3.5, which was good.
Do you get headaches from the morning medication? I definitely have an ongoing front temple headache. I'm also more fatigued, but I realize I just have to stay motivated and busy instead of worrying about the the sx. Some of this is a mind game and I want to be trusting rather than anxious.
Thanks for the support from others. I won't have any new labs for a couple of weeks as I'm now on the two-week schedule.
Alan
Loopy Lisa said
Mar 30, 2013
I am rooting for you all, and grateful to everyone that are doing these trials. You are all brave to undergo these treatments and give a lot of hope for the future. I take my hat off to you all. :*
-- Edited by Loopy Lisa on Saturday 30th of March 2013 11:24:00 PM
Biggyb said
Mar 30, 2013
Welcome Alan, good luck on labs.
Matt Chris said
Mar 30, 2013
Hello and welcome to the forum
Good to hear you are responding to the Meds.
I am also on the Turquoise II study in my seventh week. I also had high billirubin level the first two weeks, but they came down. The previous study's show that this is a common abnormality in some people because of the ABT450.
Best advice is to keep hydrated and find out would works for your own body.
Looking forward to seeing what your labs look like.
Matt
Keep listening to what your body is saying
Freshhope said
Mar 30, 2013
Just got back my labs.
Zlikster said
Mar 29, 2013
Hi Alan, hope that new test shows UND!
Best
-- Edited by Zlikster on Friday 29th of March 2013 10:19:31 PM
Freshhope said
Mar 29, 2013
I'm three weeks into the AbbVie all oral trial with ABT 450/r & 267 combo pill, ABT 333 and ribavirin. I take two of the combo pills in the morning, one ABT 333 pill and only the ABT 333 pill in the evening. I also take 3 riba pills each time.
I got a cold in the first week which developed into a sinus infection, so it was hard to tell what was related to that and what were the side effects of the tx. However, I definitely have had a headache ever since I started taking the pills, which I never had before. Fortunately, it's mild and doesn't really interfere with my work. I've also felt light headed and had some fatigue and some insomnia, but nothing that was debilitating.
I definitely had increased bilirubin, up to over 5. But part of this is related to a new condition I discovered I had - Gilbert's syndrome which has an elevated indirect bilirubin. Fortunately the intense billirubin high seems to have subsided, but I'm still waiting for my latest results.
I was at one million virus load going in and I was at 45 a week later, which is amazing. I hope to find out today what my latest blood results are from Week 2.
All the best to everyone else!
Alan
Cinnamon Girl said
Mar 29, 2013
Hi Alan, welcome! Sounds like you`re doing very well so far, and congrats on such a huge viral load drop so soon into the trial! Sorry about your cold and sinus infection, and I understand what you mean about not always being able to tell what is down to side effects (sx) and what`s not.
We have other members here also on this trial, I expect they will be pleased to speak to you too. Do keep in touch, we`ll be very interested in following your progress.
Hello Alan
Its good to hear from you again, better to hear the great SVR news. I always wondered what happened to you because you has similar high Bilirubin issues that I had during our Abbvie trial. I thought that it might be part of the reason why I might have relapsed but I guess not.
I'm very happy for all 92% that made SVR that were in the trial, but as for us 8% that never acheived SVR its been hell to try to figure out what happen and where to go from here.
Enjoy the rest of your HepC free life
matt
Congratulations Alan!! I wish you the very best of luck going forward!
Tig
Hi Alan, good to see you back! Congratulations on your SVR, what wonderful news!
You`re right that participating in any clinical trial comes with certain risks and we are grateful to all of you who do this, you are our pioneers leading the way!
Thanks for sharing your progress with us, and for your encouraging news...very good to hear!
Ps - Alan, I see that you were originally registered under a different user name, `Freshhope`, so I have joined your threads together so we can follow your previous posts.
Hi Everyone,
It's been awhile since I've been on this forum. Life got very busy! I'm glad to announce that I achieved SVR on the Abbvie drugs and I'm still clear. I think we need to help those behind us as the latest results are very promising although I realize that not everyone was successful in beating this.
Coming in as a cirrhotic, I was very nervous about how I would react to the drugs and whether I would clear as there was no data on this at the start of the trial. However, it was definitely worth it even though there were some side effects. Looking back, the biggest challenge for me was insomnia compounded by fatigue caused by the ribavirin (which affects the red blood cell count).
I did have headaches in the beginning but in my case, the headaches only lasted a couple of weeks and were never intense. I also had nausea a couple of times but only when I took the medication without food. I got a pretty bad head cold right after I started treatment which made me wonder if the drugs hit my immune system, but it's impossible to know.
As of now, my liver enzymes are normal, my platelets are slowly climbing back and my RBC count has jumped back to normal.
I do expect to see myself in the final results once they are released as I have Gilbert's which affects how I deal with bilirubin. My bilirubin stayed very high during the treatment and caused some concern, but in the end it was never serious.
I'm glad I did this trial even though every trial is a risk. For me, the side effects were manageable and I still have to pinch myself to believe that I'm finally rid of this disease. All the best to the rest of you who are either dealing with Hep C or putting your lives back together after achieving a cure.
Alan
I'm rooting for all those who have just found out they have this and are looking for a way forward. The last year has brought great opportunities for them and I'm thrilled at how things have turned around in such a short time.
I had a sudden wave of nausea today and had to bow before the little white throne in my bathroom to get rid of lunch. Nasty, but I seem fine tonight. My wife jokes that I'm pregnant. I feel fatigued, I have mood swings and now I'm nauseous! All part of the journey. The only baby i want is one that's undetectable! Alan
-- Edited by Freshhope on Tuesday 30th of April 2013 04:08:11 AM
Week 6 results. Still undetectable!
It also looks like my bilirubin is holding and even went down a little to 3.9.
I'm feeling good but still suffer from occasional headaches and some fatigue due to insomnia. Just glad to be beating this thing.
All the best to the rest of you.
Alan
Just finished week 6. It was great to see in print the results from week 4. "HCV RNA not detected." Such simple but such sweet words!
I feel so much better than at the beginning of the treatment, although I'm struggling with some insomnia. I tried melatonin but it didn't seem to make a difference. However my energy levels are still improved and I no longer feel that mind fog that I had at the beginning of the treatment. I also don't experience the headaches as intensely, but it seems to come and go/ The only negative news was a mild rash that has developed on my forehead, probalby as a result of the riba. The doctor gave me a topical cream and warned that it speeds up the replacement of skin cells so that part of my face will be less tanned and may look a different color. We'll see what happens. I'm still struggling with high bilirubin related to my Gilbert's and the effect of some of the drugs on my bilirubin levels. I'm likely to have to take weekly tests to monitor my levels and hopefully I can finish the course of treatment
All the best to the rest of you out there, especially those doing treatments much harsher than what I am going through.
Bilirubin at 4.3; ALT 24; AST 24; HGB 13.5; RBC 4.3 (a little low); WBC 6.08; Platelets 156000.
One question, does anyone else suffer from aching legs? It's not so much restless leg syndrome (I had a good chuckle at the remedies suggested for that one
) as just aching and sometimes preventing me from getting back to sleep.
Alan
Hey Alan
Good to hear that you are settling in with the Meds, it seems to come and go for me but most days I lose focus and tire about about 6-7:00 PM.
Your body might be adapting to the Meds and correctly transporting more of your Billirubin out of liver as bile via the bile ducts then into the intestines, that seems to go up and down for me as well, but keeping top of your numbers weekly is a good course and remembering which foods if any that make you feel better or worse.
I'm finishing my ninth week on the same trial ,and all is well. BTW Are you on the 12 week or the 24 week group?
Alan I am including the chart below to keep your confidence up in between your 2 week visits, this Trail was Phase II but did not include the ABT-267
Keep the faith
Matt
Keep listening to what your body is saying
-- Edited by Matt Chris on Saturday 20th of April 2013 03:08:09 AM
Great news Alan !!
Hey Alan
Know your pain brother been there, I'm in I'm out its very stressful.
Know your feeling of Joy and relief, anyway congrats on the UND it's a great word.
Matt
What a roller-coaster week. First the research nurse left a message that there was a problem with my lab work and I needed to call them right away. Then when I called in, I found my bilirubin was up and they were worried. I went to get new lab results and it came back just as I feared. My bilirubin was over 5 and they were considering dropping me from the trial. I was so frustrated. I had worked so hard to get to this point and now it would all be for nothing.
I woke up early the next morning, prayed and felt more at peace. I then wrote a letter explaining how much better I was feeling than when I had first started the treatment and asking them to allow me to continue in the trial. I went to work and tried to put it out of my mind. Then my wife called. "The nurse called," she paused as I waited to find out my dreams were about to be shattered. "You're back in the trial ... " and I breathed a sigh of relief, "and you're ..." she tried to drag it out but she couldn't hold back her excitement, "you're undetectable!"
I'm still struggling to understand what that means, but many of you know and you understand why we cry or feel numb. For now, I'm grateful and planning on continuing the journey. I still have the risk of my bilirubin climbing, but I'll face that battle when it comes.
Alan
Matt,
Glad to hear you are on the same trial. My labs came back with my viral load at < 25, which was good news but not UND yet. I was a little disappointed after the huge drop in week 1, but I realize this is a process and I have to give my body time to beat this disease. My billirubin also dropped to 3.5, which was good.
Do you get headaches from the morning medication? I definitely have an ongoing front temple headache. I'm also more fatigued, but I realize I just have to stay motivated and busy instead of worrying about the the sx. Some of this is a mind game and I want to be trusting rather than anxious.
Thanks for the support from others. I won't have any new labs for a couple of weeks as I'm now on the two-week schedule.
Alan
I am rooting for you all, and grateful to everyone that are doing these trials. You are all brave to undergo these treatments and give a lot of hope for the future. I take my hat off to you all. :*
-- Edited by Loopy Lisa on Saturday 30th of March 2013 11:24:00 PM
Welcome Alan, good luck on labs.
Hello and welcome to the forum
Good to hear you are responding to the Meds.
I am also on the Turquoise II study in my seventh week. I also had high billirubin level the first two weeks, but they came down. The previous study's show that this is a common abnormality in some people because of the ABT450.
Best advice is to keep hydrated and find out would works for your own body.
Looking forward to seeing what your labs look like.
Matt
Keep listening to what your body is saying
Hi Alan, hope that new test shows UND!
Best
-- Edited by Zlikster on Friday 29th of March 2013 10:19:31 PM
I'm three weeks into the AbbVie all oral trial with ABT 450/r & 267 combo pill, ABT 333 and ribavirin. I take two of the combo pills in the morning, one ABT 333 pill and only the ABT 333 pill in the evening. I also take 3 riba pills each time.
I got a cold in the first week which developed into a sinus infection, so it was hard to tell what was related to that and what were the side effects of the tx. However, I definitely have had a headache ever since I started taking the pills, which I never had before. Fortunately, it's mild and doesn't really interfere with my work. I've also felt light headed and had some fatigue and some insomnia, but nothing that was debilitating.
I definitely had increased bilirubin, up to over 5. But part of this is related to a new condition I discovered I had - Gilbert's syndrome which has an elevated indirect bilirubin. Fortunately the intense billirubin high seems to have subsided, but I'm still waiting for my latest results.
I was at one million virus load going in and I was at 45 a week later, which is amazing. I hope to find out today what my latest blood results are from Week 2.
All the best to everyone else!
Alan
Hi Alan, welcome!
Sounds like you`re doing very well so far, and congrats on such a huge viral load drop so soon into the trial! Sorry about your cold and sinus infection, and I understand what you mean about not always being able to tell what is down to side effects (sx) and what`s not.
We have other members here also on this trial, I expect they will be pleased to speak to you too. Do keep in touch, we`ll be very interested in following your progress.
Wishing you all the best, and good luck! ~ Jill