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TOPIC: Taking longer that expected

Taking longer that expected 6 years 4 months ago #6845

Hamilton-Gray-facebook
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great to find this thread .
I'm genotype 1a, fibrosis 3-4, treatment experienced.
Have had HCV for over 40 years.
I'm now 11 weeks into 24 weeks treatment of
Sofosbuvir / Ledisbovir & 12 weeks of Ribavirin 1200.
My first 3 weeks was a breeze with no side effects.
But it soon went down hill after that.
My Haemoglobin dropped to 110.
My mood changed.
Trouble sleeping.
No energy.
Feel nauseous all the time.
My food tastes have changed.
Don't feel like eating.
BUT hey ! I'm still breathing & in just 7 days, I finish with the Ribavirin .

Male aged 66, contracted hepC 45 years ago
Failed treatment interferon and Ribavarin 2003
Started treatment 22 October 2015, 24 week, Dr Freeman
Sofosbuvir and Ledisbovir plus 12 weeks Ribavirin
Geno 1a
Fibrosis F3/4
VL <12 at 4 weeks
VL - negative at 12 weeks

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Taking longer that expected 6 years 4 months ago #6847

zhuk Offline Platinum Member Posts: 551 Thank you received: 502 Karma: 3	Good to hear you'll be out of the grip of Riba soon Hamilton...you've had to do it harder than many of us here fortunate enough not to be subjected to it. All the best - the last 12 weeks should be a breeze by comparison . Great stuff
	GT1a since 1988, diagnosed 1990 F0, tx naive VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9 Started Mesochem sof/dac 12 weeks 01/01/2016 11/02/2016 - 6 weeks UNDETECTED AST 26 ALT 26 Last Edit: 6 years 4 months ago by zhuk. The administrator has disabled public write access.

Taking longer that expected 6 years 4 months ago #6850

DrJames
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Remember the half life of Ribavirin is about 12 days so it takes 12 days to drop to 1/2, another 12 to drop to 1/4, another 12 to drop to 1/8 of the original ie expect it to take a couple of weeks to come good when you stop.

You may be interested in this (which is from our decision support tool) Look at the f4: and fail: sections and you will see the SVR rates for 24 weeks with/without Riba from ION-3)

        sof_led: {
            default: 97,
            rating: {
                aasld: ratings.classILevelA,
                easl: ratings.A1
            },
            gt1a: {
                default: 97, // ION-1 98% (142/145) ION-3 96% 96% (165/172) Aggregate 96.8% (307/317)
                rating: {
                    aasld: ratings.classILevelA,
                    easl: ratings.A1                                   
                }
            },
            gt1b: {
                default: 99, // ION-1 100% (67/67) ION-3 98% (43/44) Aggregate 99.1% (110/111)
                rating: {
                    aasld: ratings.classILevelA,
                    easl: ratings.A1                                  
                }
            },
            f4: { 
                default: 97,
                rating: {
                    aasld: ratings.classILevelB,
                    easl: ratings.B1                                   
                },
                w12: 97,      // ION-1 97% (32/33)
                w12riba: 100, // ION-1 100% (33/33)
                w24: 97,      // ION-1 97% (31/32)
                w24riba: 100  // ION-1 100% (36/36)
            },
            fail: {
                default: 94,
                rating: {
                    aasld: ratings.classILevelB,
                    easl: ratings.B2
                },
                w12: 94,     // ION-3 94% (102/109) 
                w12riba: 96, // ION-3 96% (107/111) 
                w24: 99,     // ION-3 99% (108/109) 
                w24riba: 99  // ION-3 99% (110/111)
            }

        },

There is very little statistical difference between 11 and 12 (<10%) so given you're symptomatic and with or without Riba you are looking at an SVR of 97-99% I would be inclined to stop now.

YMMV

Last Edit: 6 years 4 months ago by DrJames.

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Taking longer that expected 6 years 4 months ago #6856

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Hi Dr James,
Thanks for taking the time to post a response to my post. I was tempted to stop the RIBA as soon as I read your response but then I knew if I failed treatment I would always wonder if it was because I stopped taking the last few tablets. This disease takes over your life and I will do anything to give the best chance of a cure.
I am always amazed that you take the time to read everyone's posts and offer your valued option. You are truly amazing and I will always be grateful for your dedication to me and so many others health. Thank you.

Male aged 66, contracted hepC 45 years ago
Failed treatment interferon and Ribavarin 2003
Started treatment 22 October 2015, 24 week, Dr Freeman
Sofosbuvir and Ledisbovir plus 12 weeks Ribavirin
Geno 1a
Fibrosis F3/4
VL <12 at 4 weeks
VL - negative at 12 weeks

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Taking longer that expected 6 years 3 months ago #9234

oldie
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Hi,
I'm new to this forum, but not to Riba.
It is the worst drug I have ever taken; I did 12 weeks of it with Peg/interferon and Simeprevir, and I failed treatment.

I hope you stopped taking it; I doubt it would make much difference to your SVR now. Even the stats the Dr. put up show minimal difference.

The filthy drug nearly killed me, truly, I was heart attack/stroke material. Blood pressure went sky high, never mind Anemia, that wasn't the hardest bit to deal with, though not nice, it was the racing mind, heart, shakes, and insomnia that nearly sent me over the edge. It's taken me nearly 12 months to start to sleep for 5 hours again, and I still wake every hour or two!
I'm supposed to have it again with Harvoni, but I'm not touching it, no matter what, I'll take my chances without it.

Just my few cents worth; sorry to rave all over your thread, but mention Riba and I'm off!

Good luck with the rest of your treatment; I hope you feel a lot better soon.

Cheers!

Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.

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Taking longer that expected 6 years 3 months ago #9235

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Hi Oldie,
I agree about the side effects of Ribavirin.
Like you I did peg interferon & Ribavirin for 12 mths back in 2003.
It was 12 mths of hell & I didn't clear.
This time round my doctor suggested that I do 24 weeks of Sofosbuvir & Ledisbovir , including the first 12 weeks of Ribavirin 1200mg.
I wasn't that keen with the Ribavirin but my doctor said it could give me a couple of percent better chance of clearing the virus.
Anyhow , I made it through the first 12 weeks {{{{{{{ JUST }}}}}}} . My Haemoglobin dropped to 104. Had all the old side effects from 12 yrs back but I preserved on to give this treatment the best chance I could,
I've now only got 10 weeks to go with the Sofosbuvir & Ledisbovir .
I feel that most of the Ribavirin has left my body over the past 2 weeks. My appetite has returned & also my taste.
Will have a FBC this week to see how the Haemoglobin has built back up.

AUSTRALIAN
HCV Genotype 1a
2003 Relapsed Peg Interferon / Ribavirin
Pre treatment VL 2,000,000
ALT 65, AST 42, ALP 111, GGT 56
Bridging F3-4
Treatment -24 weeks - Sof , Led with 12 weeks Riba.
4 weeks VL <12 Detected ALP 89 , GGT 21 , ALT 17 , AST14
12 weeks VL Undetected ALP 96, GGT 22, ALT 20, AST 20
24 weeks VL Undetected ALP 83, GGT 20, ALT 21, AST 14
EOT 6th April 2016
SVR 5 weeks VL Undetected ALP 81, GGT 31, ALT 22, AST 20

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Taking longer that expected 6 years 1 week ago #15474

Valerie Offline New Member Posts: 5 Thank you received: 7 Karma: 0	Hi I have received my first blood test results(4 weeks) and am disappointed to still have a viral load reading of 239. Has anyone else had that high a reading at 4 weeks? Thanks
	Gen 1a Treatment naive Pre tx: ALT 190 AST 203 VL 1750381 IU/mL F3-4 4 weeks: ALT 19 AST 39 VL 239 IU/mL The administrator has disabled public write access. The following user(s) said Thank You: Ariel

Taking longer that expected 6 years 1 week ago #15476

Gaj
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Hi Valerie,

We have seen others with high viral loads at 4 weeks but it needs further investigation by a doctor with experience of HCV treatment. They will be able to determine whether there is a cause such as a drug interaction or if you are just a slow responder and then recommend a suitable course of action to correct your particular situation.

Do you currently have a treating specialist with that experience?

If not, let us know as one of our NZ members should be able to advise who you can see.

G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND

Last Edit: 6 years 1 week ago by Gaj.

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Taking longer that expected 6 years 1 week ago #15478

Ariel
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Good luck Valerie, wishing you all the best, is that a significant drop from your pre treatment VL? We cannot see your stats.... you can make a 'signature' in your profile, then other forum participants and mods can see your VL pre tx, gen and F score etc and if you are tx naïve etc. Those factors and all sorts of other things seem to affect everyone differently. Anyway I wish you all the best for getting UND asap, Gaj gave the right advice to consult your doctor/specialist, hugs from Ariel.

Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18

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Taking longer that expected 6 years 1 week ago #15500

mgalbrai
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Hi Valerie,
Where there were millions before, now a couple of hundred virus per unit. Maybe you are a little on the "slow" responding side, but not much. I was still positive at 4 weeks. If the medicine continues to do its job like it has been (and will), you will be virus-free at 8 weeks. Then, kick it in the ass for another 4!!
You are good.
Your ALT is GREAT! That is a key value in determining tx effectiveness.
m

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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24

Last Edit: 6 years 1 week ago by mgalbrai.

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Taking longer that expected 6 years 1 week ago #15518

Valerie Offline New Member Posts: 5 Thank you received: 7 Karma: 0	Thank you M that's very encouraging, it's easy to overeact in these circumstances! Val
	Gen 1a Treatment naive Pre tx: ALT 190 AST 203 VL 1750381 IU/mL F3-4 4 weeks: ALT 19 AST 39 VL 239 IU/mL The administrator has disabled public write access. The following user(s) said Thank You: mgalbrai, Ariel

Taking longer that expected 6 years 1 week ago #15540

Ariel
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Hi Valerie you are cool I just wanted to say you aren't overreacting at all that was a really good question and important for your progress in so many ways. Mods are always around with info, and also other patients like myself have talked about being anxious; I am a classic case, but in talking I only got answers and support just like Mike gave you and he is SVR12 now
Keep us in the loop wishing you continued improvement that was a big drop in VL congrats so far
Hugs from Ariel

Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18

Last Edit: 6 years 1 week ago by Ariel.

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Taking longer that expected 6 years 1 week ago #15557

DrJames Offline Platinum Member Posts: 1980 Thank you received: 7261 Karma: 111	Hi I have received my first blood test results(4 weeks) and am disappointed to still have a viral load reading of 239. Has anyone else had that high a reading at 4 weeks? Hello Valerie, I have just looked at our SVR group and there is this group who were a bit high early on who are now SVR4 +/- SVR12 The dates are: start, end, SVR4 and SVR12
	YMMV Last Edit: 6 years 1 week ago by DrJames. The administrator has disabled public write access. The following user(s) said Thank You: mgalbrai, Ariel, isaing4

Taking longer that expected 6 years 1 week ago #15639

coral
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Hi Valerie,

I was also a bit slower to respond (VL 58 at 4 weeks and still detected at 9 weeks). However my ALT19 and AST 24 at 4 weeks were very similar to yours and showed that things were heading in the right direction. There have been some very quick responders so I know it can be a bit disappointing but just hang in there. At 12 weeks my results were finally virus UNDETECTED.

Borrowing from an early analogy by Dr James some of our little viral critters are wearing flak jackets and take a little longer to destroy - but destroyed they will be.

I'll look out for next results.

Coral

G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...

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Taking longer that expected 6 years 1 week ago #15697

isaing4 Offline Elite Member Stop saying 'I wish' and start saying 'I will'. :) Posts: 239 Thank you received: 423 Karma: 5	Hi Valerie, I was also a bit slow responder. My VL was 83 at 4 weeks of treatment. And <15 at 8 weeks. But finally UND at 8,5 weeks. I had some emotional weeks on treatment! Two more weeks to 12 weeks after EOT. I hope to have my own SV12! Big decrease in ALT! ALT 19 is very reassuring! I wish you good luck and UND soon!
	HCV since I don't know. Diagnosed in 2010. GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive, started 12 wks Twinvir on 06.12.2015. Feeling great and grateful virus not detected 06.02.2016 & SVR24 This email address is being protected from spambots. You need JavaScript enabled to view it. Last Edit: 6 years 1 week ago by isaing4. The administrator has disabled public write access.