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TOPIC: Feels like possible relapse - plan not panic!

Feels like possible relapse - plan not panic! 2 years 3 months ago #15107

  • Phoenix
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Hi all, haven't been here for a while. Finished 12 weeks of sof/dac a month ago, undetectable at weeks 4 and 8. Type 1, F0-1, 57yo, 39 years with HCV, previously failed on interferon and on inter/riba/bocep.

Felt good for a few weeks after treatment, but the last few days I feel like I've hit a wall. Headaches, mild to moderate nausea. In short I feel liverish the way I used to...

I don't want to panic, I want to plan. If this is the virus coming back, I want to know what to do. I'm going to get a viral load test tomorrow and if it's positive I want to know what my options are. With a waitlist at the only liver clinic in my part of Queensland already over 2000 and only treating about 100 people at a time (yes, exactly the scenario Dr Freeman warned would happen on Radio National), I may need generics again.

All thoughts, knowledge and experience welcome!
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15108

  • Ariel
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Hi Phoenix
I'm sorry to hear of the symptoms and anxiety you are dealing with especially given the peginf disasters. That is something we sure are trying to put behind us and I hope you get good news this time, at least the tx is easy.
There are re-treatment options I'm pretty sure there's a section somewhere here pop a search in. You can always contact the Tassie office and ask for advice too. Even if it's just to reassure you. There's a couple of people having another go. If the outcome isn't great you can still go again I understand.
I'm hearing you.
Wishing you all the best.
Let us know how you go you have friends here :)
Hugs from Ariel #flower
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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Feels like possible relapse - plan not panic! 2 years 3 months ago #15110

  • DrJames
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Hi Phoenix,

Please get LFTs as well. If your ALT is out of range you are probably right, if it is still normal that would be reassuring.

If we need to retreat you that's possible and can be prompt.

Best

James
YMMV
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15111

  • tweakmax
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Do we need to wait till ravs phase out

Or can retreat immediately
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15112

  • DrJames
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NS5A RAVs are typically quite fit so don't decline quickly. They are not created by treatment, they are selected. Many people have detectable NS5A RAVs at baseline, but all that means is they have enough to count.

If you get the NS5B RAV S282T you do have a problem but that causes on treatment failure, not relapse.

I see no logical basis to delay retreatment for most people, provided we can do something different from last time as in pick one or more of longer, stronger or different drugs.
YMMV
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15114

  • kenbasman
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We are all different. I felt terrible from about 6 weeks into treatment and only now (7 weeks post tx) am i starting to feel a bit better every day. I came out UND at SVR4 with all kinds of gastric and other problems. Hopefully it is just your liver healing that is giving you grief. We talk a lot about getting rid of the virus, but a lot of us have liver damage that has to be considered as well. I've got my fingers crossed for you...
HCV 35 yrs G1a F3 Tx naive
started Lesovir-C 15/12/2015
pre tx: VL 5,250,000 ALT 374 AST 208
FIBROSCORE 10.4

4 weeks tx ALT 29/ AST 33. VL < 12 UI/mL
8 weeks tx ALT 29/ AST 34. VL UND
4 weeks after tx UND. SVR4. ALT 24/AST 18
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15115

  • Serg
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Hi Phoenix,

I hope you will attain SVR. But, if you are F0-1 at 57 after 39 years of HCV-infected - it is unlikely that you will die from HCV-related cirrhosis (and its complications) even in case of "viral relapse". Thus, it needs to compare possible benefits and risks of "retreatment attempts". Serious medications (for example, like interferon or boceprevir) may give more "harm" than "good". If there is no urgent need for treatment (for example, severe extrahepatic manifestation of HCV - like cryoglobulinemic vasculitis with damage of kidneys) - it may be better to defer treatment in case of relapse after sof+dac failure.
Deferral of treatment is recommended, pending availability of data for patients with HCV genotype 1, regardless of subtype, in whom previous treatment with any HCV nonstructural protein 5A (NS5A) inhibitors has failed, who do not have cirrhosis, and do not have reasons for urgent retreatment.
(www.hcvguidelines.org/full-report/retrea...r-therapy-has-failed)
Probably infected in 1977
2005 - diagnosed with HCV 1b, compensated F4, 15 mln viral load, ALT 320
2005-2006 - PegIFN/rib 48 weeks treatment, relapse
2016 - compensated F4, MELD 8-9, ALT 100-160
2018 - compensated F4, MELD 8, ALT 91
Last Edit: 2 years 3 months ago by Serg.
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15120

  • darbara
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well I am EOT 7 weeks, the last week has been crap right flank pain , general lethargy, bloating.
I was UND 4, 12 ON treatment AND got SVR 4. iT COULD BE THINGS GETTING WORSE OR BACK TO NORMAL CANT SAY
Treatment naive
F 3/4
Genotype 1 a
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
Last Edit: 2 years 3 months ago by darbara.
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15121

  • Geno1b4
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I'm too in the same panic boat after EOT last tuesday. I have to wait for one more week to get EOT PCR results, didn't do any since started Ledifos tx in January. I'm starting to feel some pain in right abdomen as well as itchy skin all over, just like before tx. Yesterday also got one of those awful headaches that last all day.
I'm trying to convince myself it is just my body getting back to normal, but in any case just like Dr.Freeman said will draw blood tomorrow for LFT's.
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
Last Edit: 2 years 3 months ago by Geno1b4.
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15123

  • darbara
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Yes this itchy skin is another thing I have, feels like the 1st week on treatment
Treatment naive
F 3/4
Genotype 1 a
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15137

  • sonix
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Don't panic! I too have good and bad days and niggling thoughts about relapse, but was UND at 6 weeks into treatment and just got SVR4 result. :) Some pre-tx symptoms are still there but probably related to things such as age, fitness level, diet, fibromyalgia. osteoarthritis, candida overgrowth or failure to quit smoking (yet).
Think positive but see your doctor and discuss your concerns.
M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15141

  • CJ
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Ah Phoenix, good luck, I have fingers crossed for you.

Try to think positive, hope all's ok for you.

Love Cindi x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15148

  • Phoenix
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Thank you all for wonderfully helpful and supportive replies. It's kind of normalising that others are struggling post-treatment as well.

Very best wishes to you Darbara, Kenbasman, Geno1b4 and Sonix. May you all be perfectly cured!!!

I ended up not getting tests today, though I'm still feeling very tired. Started thinking along your lines, Serg. There's no hurry. I also feel that after doing the 6 months on inter/riba/bocep 2 years ago and now just finishing this, that I would struggle to find the will for another go right now. And a big part of me wants to get back to just living, cured or not.

Though I think I will follow your advice Dr Freeman - thank you! - and get my liver functions done at least in the next couple of days. Would be useful and reality checking to at least have some data on what's going on.

Ariel, CJ and Tweakmax, thanks for being with me here.

Yet again this forum has helped me through a really rough moment! :)
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15150

  • DrJames
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Hello Phoenix,

Take the weight off and get some LFTs - if they look OK you can relax, and if not we can make a Plan C for you.
YMMV
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Feels like possible relapse - plan not panic! 2 years 3 months ago #15154

  • Phoenix
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Thanks Dr, will do, and I'll let you all know how it goes. Finger crossed and prayers...
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