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TOPIC: Undetectable! :) But more sides... all good

Undetectable! :) But more sides... all good 3 years 8 months ago #11503

  • Phoenix
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Hi all, apologies I didn't share the good news a couple of weeks ago (been trying to avoid all thoughts of hep c altogether and just live...). 4 week test showed "undetectable" !! :-) Interesting that the results sheet listed viral loads over the years back to 2000 - always over log 6 (aside from when I cleared it on previous treatment before relapsing...) and now zero.

Felt great in week leading up to getting results (apart from some insomnia, which has been a theme), but over weeks since have been feeling increasing fatigue and brain fog. Am now in week 7-8.

Having a real "hitting the wall" day today. Can barely sit up to type this. Soooo tired and trying to think one thought after another - like thinking as zombie walking... Not sure how much is meds and how much perhaps pushing myself a bit - live in the tropics and worked through heat of the day outdoors all day Sunday - perhaps this is a 2 day after hangover - but I think in general the last few weeks a bit worse, I'm glad I'm not working... though insomnia seems perhaps not as bad as the fatigue has got worse...

But I'll take it! Still "a walk in the park" compared to "rat poison" interferon.

Spirits good, but body weak at the moment. Thanks all of you for being there. A new life beckons :)
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Undetectable! :) But more sides... all good 3 years 8 months ago #11504

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Oh God, foggy brain didn't check the category and I've posted in FixHepC Admin. Can someone move this to Patient Stories?
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Undetectable! :) But more sides... all good 3 years 8 months ago #11507

  • kenbasman
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I went through the same thing around week 7 after recovering from a cold. Everything was a mess. Lasted about 10-12 days. I still feel a bit achy but waaaaay better. Hopefully it will be similiar for you. Fingers crossed....
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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Undetectable! :) But more sides... all good 3 years 8 months ago #11508

  • Phoenix
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Thanks Ken. Always good to know you're not alone. :)

Just had to cancel a social engagement for this afternoon and it's triggered all this self-doubt - have I cause the fatigue myself? am I exaggerating it? could I really gave gone anyway and made other people happy? I've had a lifetime of cancelling things and making excuses, feeling weak when I do it... so sick of it. (Shakes self out of self-pity...)

I'm undetectable. This is not like after the interferon. The odds are much better. I'm holding onto that.

It's really all good. I have a good life with good friends and they'll understand. Going to bomb my mind out with some Netflix now... (watching Jessica Jones - good dark fluffy tv harmless tv drug...)
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Undetectable! :) But more sides... all good 3 years 8 months ago #11511

  • Gaj
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Hi Phoenix,

Definitely not alone! After 14 weeks I find I function pretty well most days as long as I don't push things too hard. Still have the odd day when I'm just not up to the hustle and bustle of life and need to take time out for myself. These meds don't knock the crap out of us like the Peg did but as a result sometimes I think we ask too much of ourselves, forgetting that it takes time for our bodies and minds to adjust to the new virus free state.

Great to hear your good news though! :+1:
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
:cheer: :cheer: :cheer:
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Undetectable! :) But more sides... all good 3 years 8 months ago #11512

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Thanks Gaj, that's a good reality check. I keep expecting myself to suddenly have lots of energy and feel great, just because some people have... but truth is I've always been on the pointy end of sfx. Gentle with self def the way to go...
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Undetectable! :) But more sides... all good 3 years 8 months ago #11513

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Though another possibility is that I feel like crap and don't respond like many others partly because I perhaps have Post Interferon Syndrome. That's the next thing I'm going to investigate after treatment is over...
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Undetectable! :) But more sides... all good 3 years 8 months ago #11519

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I'm hearing you Phoenix at Week 7 too its bed party time here
Time to make out with my pillow for extra fun haha
Yup I also am cancelling social engagements that I am really keen on dang!
The good bit is we are going to be cured at last!
Tally ho, there is a bed to be dealt with; off I go to sort it out ha! PS its late avo here and I just woke up ;)
Zzzzzz
Love from Ariel #flower #love :evil: #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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Undetectable! :) But more sides... all good 3 years 8 months ago #11523

  • LondonGirl
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lHi Phenix, Also week 7 here and getting over chest infection. I cannot seem to shift the sinusitis.
Head foggy, ache, eyes ache, fatigue & don't want to see people. Maybe it's the build up of meds over the weeks.
Determined to drink more water, although the carpet on route to the loo is becoming worn out!
Not long to go now, although the first weeks of tx seemed to fly by the second half seems to be crawling.
Yes, try to be nice to ourselves, the lovely Dr Dubasis from MonkMed said 'do things that makeyou happy'
Must try harder ;)
Warm wishes from the UK
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 3 years 8 months ago by LondonGirl.
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Undetectable! :) But more sides... all good 3 years 8 months ago #11531

  • dointime
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Though another possibility is that I feel like crap and don't respond like many others partly because I perhaps have Post Interferon Syndrome. That's the next thing I'm going to investigate after treatment is over...

I know what you are saying Phoenix. I've also seen how some people pick up very fast after they start tx but that's not happened to me. On riba I didn't expect to feel better and I didn't, but even without the riba the fatigue hasn't lifted much.

So my line of thinking at this point is to wait and finish the meds. Give it a few months to recover and then take stock. Presuming a successful tx, if I'm still dragging ass then that's one cause eliminated and investigations will begin on what is still wrong. I'll be looking at throid function, gluten/food intolerances, general diet and exercise lifestyle and anything else that might be affecting me. I am also post interferon. I read an article posted here a while ago which made the point that people with hepC tend to accept their fatigue more readily than others ( because they believe it is hepC related and there's nothing they can do about it). Well, I've had enough. If mine doesn't go after SVR, I'm not stopping till I find the reason why.

dt
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Undetectable! :) But more sides... all good 3 years 8 months ago #11535

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Congrats at being undetected! :cheer:

Hope you feel better.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
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Undetectable! :) But more sides... all good 3 years 8 months ago #11604

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Thanks Ariel, LondonGirl, dointime and Greedfighter for the great support! I'm not feeling like a weird failure anymore for not suddenly feeling great. Hearing from you guys helped me through a really low day yesterday.

Feeling a bit better today - actually going to go out shopping. But I won't push it, still not firing on many cylinders. I agree it's best to just hang in there now, get cured and a few months with meds out of my system and then reassess. No doubt both the virus and the interferon and perhaps other meds have done some damage that will need to be more carefully assessed, at the right time. I almost say that with gritted teeth though - it's hard to let go of the fantasy that I'm going to be cured and then bounce around like a 20 year old... though at 20 I'd already had the virus 2 years and I'm nearly 60 now. Fantasies are funny things... :oops:

Really glad I've got this space to talk about what's really happening with people who really understand. Have a great healing day everyone!
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Undetectable! :) But more sides... all good 3 years 8 months ago #11610

  • kenbasman
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Peoples advice about not pushing things seems really smart. I went out for 1/2 hour jog today, thinking it would clear my head some. Knocked me on my ass for the rest of the day. Sometimes it's hard to know when being active will help or hinder the sides. I thought I was in the clear, passed through a rough patch and ready to take on the world again. Wrong. It worked for me on sunday and monday but todays run wiped me out. Feeling somewhat better now that I am lying in bed after struggling through my day. Don't know exactly what this means or how it might help your situation. Just thought I would share...
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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Undetectable! :) But more sides... all good 3 years 8 months ago #11627

  • Phoenix
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I can soooo relate to that Ken. When my energy's okay I am always ending up doing too much - it's only later that I usually notice that I've done too much because I've crashed - or even a day or two later. Combining too much activity with not enough water is a big mistake I make sometimes. Got to keep that water up...

Been out shopping today. Feeling really hungry - ate a big sushi box and brought home an apple pie and a tub of coconut yoghurt... hard to resist when I'm feeling low on energy sometimes. My body seems to be saying "give me fuel now!" Real craving feeling. At least I walked past the chocolate aisle :P
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Undetectable! :) But more sides... all good 3 years 8 months ago #11630

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Agree, constantly stuffing face with unusual foods for me anyway and get tired easily
Defs a good idea not to overdo things

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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