Sudden elevation of ALT on triple therapy week 25.
Midnight said
Feb 28, 2015
Thanks everyone for the kind words and encouragement.
I'm feeling calmer now and seeing as how the treatment landscape is developing more optimistic too.
I'll be getting on with the day to day stuff from here on in and will let you all know how I get on with future treatments.
Best wishes to all
Tig said
Feb 26, 2015
Hey Tony,
I was hoping for better news and am sorry to hear of your relapse. It's never something easy to deal with or understand, but I know you're doing your best. The new protocols keep improving with each trial and after you've had time to recover from 48 weeks of hell, you'll get the opportunity to finally rid yourself of this thing we rightly call "The Dragon". Hang in there and onto the knowledge that your day is coming. We're here for you buddy. Don't hesitate to reach out if you want to talk...
Tig
malekula man said
Feb 26, 2015
Hi Tony,
I'm sorry for your bad news. I know how it feels for first few days. But later you realize that the battle can be won. New drugs, new interferon-free Tx and you will be OK.
Harvoni or Sovaldi + Daclatasvir will be your best weapon if you start now.
The ABBVie's VIEKIRA PAK is not provided for relapsed patients after Tx with any inhibitor (Telaprevir or Incivek/Incivo in your case).
Another player on this market is the combination Grazoprevir/Elbasvir (MK-5172/MK-8742) by Merck (MSD outside USA and Canada) - it will be submitted this year to FDA and probably same time in Europe. I know a guy from Israel who was on studies - he did <15UI/ml 2nd week on Tx, UND for 4th week, SVR-12 and SVR-20, waiting for SVR-24 now.
In same time Gilead announced last November the data of Phase 2 for GS-5816 (Velpatasvir) in combination with Sovaldi (Sofosbuvir)- 100% SVR-12 for relapsed prev TX with cirrhosis, 1Gen without Riba, 12 weeks regiment.
So, you will have soon many option of interferon-free Tx with no side effects, easy going and for 24 weeks max.
Don't give up! My best wishes and good luck!
MM
-- Edited by malekula man on Friday 27th of February 2015 02:05:18 AM
Cinnamon Girl said
Feb 26, 2015
Hi Tony,
I`m so sorry to hear you`ve relapsed after going through the whole 48 weeks of Incivek triple, I can only imagine how totally shocked and disappointed you must be feeling and I really sympathise.
Sovaldi has been delayed by the NHS for general use in England because of budgetary considerations although some people are getting it now with either Ledipasvir (as Harvoni) or with Daclatasvir but only through a compassionate use programme. The situation should change though later in the year, as Malcolm said, and you`ll need a good break now anyway before starting another treatment.
Give yourself time to come to terms with this and recover, physically and emotionally, from the treatment and try to forget about Hep C for a while. Your time will come and the next treatment options for you will be far easier and more effective too.
Wishing you all the best of luck, take care of yourself!
mallani said
Feb 26, 2015
Hi Tony,
To relapse after going through the 48 week Incivek ordeal is a real bummer. Next time will be a lot easier.
I would avoid another Interferon treatment as it does not seem to work for you.
You shouldn't take another antiprotease like Simeprevir, as any Incivek RAV's are also resistant to Simeprevir.
Hang out for Sovaldi and Ledipasvir (Harvoni) or Sovaldi and Daclatasvir. They should be available in the UK later this year.
Your liver has had a break, so there's no rush. It'll take a year to get rid of the Interferon nasties. Good luck.
Midnight said
Feb 26, 2015
Just to let you know, I completed the 48 weeks and remained UND until 6 weeks post treatment and then relapsed
I just found out yesterday and the shock has been quite something!
I guess with my ALT's running so high throughout treatment it is no surprise.
I'm wondering how long I will now need to recover from treatment before I can try something else?
As I'm in the UK the options are a little limited at present although I understand that Harvoni is under consideration and a decision should be made this summer.
I know that Sof and Sim are now approved but only with Peg and Riba and I'm not sure I'm in a rush to take that stuff again.
Any advise? as I want to be informed before next seeing my consultant...
Tig said
Aug 5, 2014
Hi Tony,
I think you're going to experience some elevated enzymes until your liver has had time to recover from the inflammation. With a FS score of 14, you've obviously got some fibrosis to deal with. Once you achieve SVR and in time, some fibrosis regression, you'll see those numbers correct. It takes time, and you will see fluctuations during treatment, so try and not stress too much. I know it's difficult, but you're responding well. As long as those VL's keep returning UND, you're looking good!
Tig
Paul B said
Aug 5, 2014
I used to get the stabbing pains intermittently but have had them for about 2 months prior to treatment and all through the 8 weeks so far. Often the side pain is worse than any of the sx from the drugs. I had my gall bladder removed about six years ago so it is not that !!
Midnight said
Aug 5, 2014
Hi Tig
My pre treatement ALT was 121, then it dropped to 76 about 12 weeks in and then shot up to 191 at 24 weeks. Not sure about the AST.
My platelets have also jumped about a bit and dropped at one point to 60, then up to 90 and now at 70.
Nurse seems to think its my liver taking a hit from the meds.
They did another PCR test today so hopefully I'll still be UND when I get the results in 1st week Sept.
Sides i getting way with it lightly, Telap was a bit grim but the Inf/Peg doesn't seem to bother me too much, comparatively speaking.
Hopefully the ALT's were a blip but to be honest my liver still seems to be unsettled and I have frequent stabbing pains.
Tig said
Aug 5, 2014
Hi Tony,
I believe you're on triple with Incivek, right? It would help if you would list your treatment protocol in your signature area. It helps greatly when replying to posts. Do you have any additional lab work results that you can share with us? The liver enzymes do tend to fluctuate during treatment, especially on the protease inhibitors like Incivek. The important thing is that you're remaining undetectable! What was your pretreatment ALT/AST levels? That might help to understand what is going on. Those levels will fluctuate, so it's not uncommon to see them do that. Any comments from your doctor on the subject? Let us know how things progress and how much longer you've got left. Good luck!
Tig
Matt Chris said
Aug 5, 2014
Hey Tony
Wow! that's great news, to have such a high ALT number and still be clear is amazing.
What does your (LFT) Liver Function Test now read?
Matt
Midnight said
Aug 5, 2014
Good news still undetectable
So I'm still all in...
Very happy
Not sure why the levels jumped but treatment team will keep an eye on it.
Liver and spleen area still feel intermittently tender.
Time to try and relax again.
Best wishes to all...
Huey said
Jul 19, 2014
My liver pains turns out are from my gallbladder ,, get it checked.
AngieV123 said
Jul 19, 2014
My ALT & AST were both significantly elevated during treatment though I was undetected. My doctor did not seem worried. I was on a different TX (interferon, riba, sovaldi) but I hear that they can be hard on the liver. A month after tx, my levels were slowly dropping. I had the feelings of inflammation in my liver as well. A test will certainly be a good idea just so you can rule out hcv returning. For me, it was the meds. I know it's worrisome.
mallani said
Jul 18, 2014
Hi Tony,
A significant rise in ALT during Rx is a bit of a worry. You must be due for your 24 week VL, so that should tell the story.
Being Undetected at weeks 4 and 8 on the Incivek triple is regarded as an RVR, so you should feel confident.
There's nothing you can do about it, but I hope you get your results soon. The liver pains may be unrelated. Let us know. Cheers.
Midnight said
Jul 18, 2014
Hi all,
Just got back from seeing the nurse and was told my ALT had risen from 76-191 since my last test 2 months ago.
The PCR hadn't been completed so no way to know if the virus has returned. Although the nurse said not to worry as levels can fluctuate during treatment.
I'm currently doing 48 weeks with Teleprevir. I was UND at week 4 and also at week 8. Fibroscan 14.
I haven't had another PCR since but noticed some severe stabbing pains in my liver over the last couple of weeks.
Is it of concern that the ALT has risen so sharply?
Thanks everyone for the kind words and encouragement.
I'm feeling calmer now and seeing as how the treatment landscape is developing more optimistic too.
I'll be getting on with the day to day stuff from here on in and will let you all know how I get on with future treatments.
Best wishes to all
Hey Tony,
I was hoping for better news and am sorry to hear of your relapse. It's never something easy to deal with or understand, but I know you're doing your best. The new protocols keep improving with each trial and after you've had time to recover from 48 weeks of hell, you'll get the opportunity to finally rid yourself of this thing we rightly call "The Dragon". Hang in there and onto the knowledge that your day is coming. We're here for you buddy. Don't hesitate to reach out if you want to talk...
Tig
Hi Tony,
I'm sorry for your bad news. I know how it feels for first few days. But later you realize that the battle can be won. New drugs, new interferon-free Tx and you will be OK.
Harvoni or Sovaldi + Daclatasvir will be your best weapon if you start now.
The ABBVie's VIEKIRA PAK is not provided for relapsed patients after Tx with any inhibitor (Telaprevir or Incivek/Incivo in your case).
Another player on this market is the combination Grazoprevir/Elbasvir (MK-5172/MK-8742) by Merck (MSD outside USA and Canada) - it will be submitted this year to FDA and probably same time in Europe. I know a guy from Israel who was on studies - he did <15UI/ml 2nd week on Tx, UND for 4th week, SVR-12 and SVR-20, waiting for SVR-24 now.
In same time Gilead announced last November the data of Phase 2 for GS-5816 (Velpatasvir) in combination with Sovaldi (Sofosbuvir)- 100% SVR-12 for relapsed prev TX with cirrhosis, 1Gen without Riba, 12 weeks regiment.
So, you will have soon many option of interferon-free Tx with no side effects, easy going and for 24 weeks max.
Don't give up! My best wishes and good luck!
MM
-- Edited by malekula man on Friday 27th of February 2015 02:05:18 AM
Hi Tony,
I`m so sorry to hear you`ve relapsed after going through the whole 48 weeks of Incivek triple, I can only imagine how totally shocked and disappointed you must be feeling and I really sympathise.
Sovaldi has been delayed by the NHS for general use in England because of budgetary considerations although some people are getting it now with either Ledipasvir (as Harvoni) or with Daclatasvir but only through a compassionate use programme. The situation should change though later in the year, as Malcolm said, and you`ll need a good break now anyway before starting another treatment.
Give yourself time to come to terms with this and recover, physically and emotionally, from the treatment and try to forget about Hep C for a while. Your time will come and the next treatment options for you will be far easier and more effective too.
Wishing you all the best of luck, take care of yourself!
Hi Tony,
To relapse after going through the 48 week Incivek ordeal is a real bummer. Next time will be a lot easier.
I would avoid another Interferon treatment as it does not seem to work for you.
You shouldn't take another antiprotease like Simeprevir, as any Incivek RAV's are also resistant to Simeprevir.
Hang out for Sovaldi and Ledipasvir (Harvoni) or Sovaldi and Daclatasvir. They should be available in the UK later this year.
Your liver has had a break, so there's no rush. It'll take a year to get rid of the Interferon nasties. Good luck.
Just to let you know, I completed the 48 weeks and remained UND until 6 weeks post treatment and then relapsed
I just found out yesterday and the shock has been quite something!
I guess with my ALT's running so high throughout treatment it is no surprise.
I'm wondering how long I will now need to recover from treatment before I can try something else?
As I'm in the UK the options are a little limited at present although I understand that Harvoni is under consideration and a decision should be made this summer.
I know that Sof and Sim are now approved but only with Peg and Riba and I'm not sure I'm in a rush to take that stuff again.
Any advise? as I want to be informed before next seeing my consultant...
Hi Tony,
I think you're going to experience some elevated enzymes until your liver has had time to recover from the inflammation. With a FS score of 14, you've obviously got some fibrosis to deal with. Once you achieve SVR and in time, some fibrosis regression, you'll see those numbers correct. It takes time, and you will see fluctuations during treatment, so try and not stress too much. I know it's difficult, but you're responding well. As long as those VL's keep returning UND, you're looking good!
Tig
I used to get the stabbing pains intermittently but have had them for about 2 months prior to treatment and all through the 8 weeks so far. Often the side pain is worse than any of the sx from the drugs. I had my gall bladder removed about six years ago so it is not that !!
Hi Tig
My pre treatement ALT was 121, then it dropped to 76 about 12 weeks in and then shot up to 191 at 24 weeks. Not sure about the AST.
My platelets have also jumped about a bit and dropped at one point to 60, then up to 90 and now at 70.
Nurse seems to think its my liver taking a hit from the meds.
They did another PCR test today so hopefully I'll still be UND when I get the results in 1st week Sept.
Sides i getting way with it lightly, Telap was a bit grim but the Inf/Peg doesn't seem to bother me too much, comparatively speaking.
Hopefully the ALT's were a blip but to be honest my liver still seems to be unsettled and I have frequent stabbing pains.
Hi Tony,
I believe you're on triple with Incivek, right? It would help if you would list your treatment protocol in your signature area. It helps greatly when replying to posts. Do you have any additional lab work results that you can share with us? The liver enzymes do tend to fluctuate during treatment, especially on the protease inhibitors like Incivek. The important thing is that you're remaining undetectable! What was your pretreatment ALT/AST levels? That might help to understand what is going on. Those levels will fluctuate, so it's not uncommon to see them do that. Any comments from your doctor on the subject? Let us know how things progress and how much longer you've got left. Good luck!
Tig
Hey Tony
Wow! that's great news, to have such a high ALT number and still be clear is amazing.
What does your (LFT) Liver Function Test now read?
Matt
Good news still undetectable

So I'm still all in...
Very happy
Not sure why the levels jumped but treatment team will keep an eye on it.
Liver and spleen area still feel intermittently tender.
Time to try and relax again.
Best wishes to all...
My liver pains turns out are from my gallbladder ,, get it checked.
Hi Tony,
A significant rise in ALT during Rx is a bit of a worry. You must be due for your 24 week VL, so that should tell the story.
Being Undetected at weeks 4 and 8 on the Incivek triple is regarded as an RVR, so you should feel confident.
There's nothing you can do about it, but I hope you get your results soon. The liver pains may be unrelated. Let us know. Cheers.
Hi all,
Just got back from seeing the nurse and was told my ALT had risen from 76-191 since my last test 2 months ago.
The PCR hadn't been completed so no way to know if the virus has returned. Although the nurse said not to worry as levels can fluctuate during treatment.
I'm currently doing 48 weeks with Teleprevir. I was UND at week 4 and also at week 8. Fibroscan 14.
I haven't had another PCR since but noticed some severe stabbing pains in my liver over the last couple of weeks.
Is it of concern that the ALT has risen so sharply?
I worried the virus may have returned.