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TOPIC: Any Post-Treatment Reflections?

Any Post-Treatment Reflections? 2 years 3 weeks ago #9650

  • Chejai
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I wanted to start this thread to ask anyone who's finished Tx, and still on here, if they have any comments/thoughts looking back over their Tx period. There are many who have finished recently and many of us 'newbies' who have started this month. We are all Tx naive, in regards to using the DAA's, even those who've endured the horrors of the old Tx.
So, anyone who has now completed their Tx and can compare pre and post symptoms, or maybe things they would have done differently, side effects that were obvious and those that you didn't notice until later - any reflections at all! I know I would greatly appreciate hearing from you :)

I know people still comment on various other threads but I lose track and still suffer days of 'brain fog' :huh:

Thank you :) #love
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9653

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I have no issues. None. I am in the middle of ditching lexapro now. Far worse than any DAA sides. I was so messed up from the stress and worry my doc convinced me I needed it. Anyway, everything is fine other than that.
I can now redefine "normal". I really don't know normal, other than its a setting on the washing machine..
Mike
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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
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9654

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Thanks Mike, so do you mean you feel the same as before Tx? Or 'better' and you're redefining what you thought was your 'normal'?
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9657

  • mgalbrai
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No.
Before tx, I had constant dyspepsia. I got to the point I could eat no meat or any type of fats. I lost 50 lbs in 18 months and wasn't obese to start with. Violent hiccups and and feeling so bloated I couldn't sleep. It was horrible. The most bland foods would trigger it, so I just was afraid to eat anything. I would plan to eat one day, knowing I wouldn't be able to sleep, then fast the next so I could get some rest. Not good. No medicine would help. Endoscopies and colonoscopies showed nothing abnormal. My liver was just not able to handle its digestive duties. Ten days into tx, boom, it stopped. I can eat anything.
The extreme fatigue and insomnia are simply gone. I'm sure a lot of that was stress related, but that didn't make it less real. I couldn't stand knowing what the virus was doing in my body and knowing there was an effective cure, but one so expensive it would change all my plans for the future if I had to pay a $100,000 to get it.
The chronic joint and muscle pain is gone. My doctor said no NSAIDS after my diagnosis. Now, I don't need them.
I was seldom without some type of infection. Sinus, ear, lungs, throat. As soon as one would clear, another would start. Cold and sore throat all the time. None now.
Numb feet and hands.
And a senile, forgetful mental state that was getting worse and worse.
Basically, I was simply existing in a very unpleasant manner.
Put the rage I felt toward Gilead, the government and my insurance company on top, and you have a really messed up person on your hands.
IT IS ALL GONE!
Now, I am doing everything I can to help anyone I can avoid the hell that I went through.
You asked for it.
Now you know.
Life is good.
I've just got some catching up to do.
I've already started and I'm enjoying the hell out of every minute of it.
Mike
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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
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9701

  • Skank
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When did you finish Mike ? I finished 12 wks of Sov / Dak on the 5th of January, and EOT blood work indicate that the predicted rosey 'surrogate outcome' has been achieved - LFT's still in the normal range & no detectable virus, as was the case after 4 wks of treatment - but the extreme fatigue & insomnia have NOT gone away ..... yet. Quite disappointed that I don't feel better by now, and hoping that it's just a matter of more time & more patience, but I desperately need to get back in the workforce and make some money before I go under. Still can't walk more than
100 yrds without stopping to rest
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9702

  • LondonGirl
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Hey Skank :)

Great to hear you got treated, I expect it will take some time for you to heal after all you've been through.
Onwards and upwards, take care of yourself over these weeks of recovery.

I wish you freedom and wellness my friend.
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
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9703

  • Skank
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Just read your profile Mike and can now answer my own question, looks like you finished about 9 days after me. Although your cocktail was different to mine, I'm guessing that the salient point that could explain my ongoing fatigue & insomnia is that I've been oscillating between F3 and F4 for over a decade, so hopefully I just need to give it more time. Your upbeat reflections are encouraging though Mike
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9704

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Hey Skank,
I finished January 14. My energy started coming back about halfway through the first month of treatment. A lot of my fatigue was due to not being able to sleep. How are you otherwise? How did your overall blood work come out?
Mine were all in the normal ranges for the first time ever.
You should begin to feel better as you recover. Your body has been fighting hard for probably a very long time. It will probably take bit of time.
Good Luck,
Mike
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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
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9718

  • Vororo
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I can completely agree with Mike's comments, although my starting point was much less severe than his. Knowing there is a treatment available, but that the cost to national health services makes it still out of reach was an incredible source of anger and frustration to me. Even though I knew I was not a severe case as far as fibrosis tests are concerned, I also knew that the virus was having a serious effect on my health in lots of small ways. Before treatment, it seemed like I had been driving around in 2nd gear for years. And I kind of got used to it. I didn't know any more what it was like to be normal and healthy. A few weeks ago, I posted some improvements that I noticed after just 4 weeks of treatment.

fixhepc.com/forum/questions-and-answers/...nt.html?start=6#6824

Lots of little things just got better. After just 4 weeks, it was like my body had suddenly re-discovered 3rd gear, and I could drive all day on that. It was also like I could give an explanation to the fatigue, the skin problems, the nose-bleeds, the bruises, because all that has now long gone.

Today, I am 3 days away from the end of 84 days of Sof+Dac. About 10 days ago, it seemed like I changed gear again. and I can now speed along in 4th gear all day. I can now work a 12-hour day, and still have energy and still be in a good mood in the evening...

Probably there is a psychological aspect to some of that. Some people might even try to put the previous fatigue and skin problems down to psychology. But I had those problems before I knew I had Hep-C! And the rest? I don't think so! On the other hand, there is a lot of positive psychology going on through just feeling better. For example, it also seems like everyone at work looks at me differently because I feel better and I look better.

Am I "officially cured"? I don't know yet. Still awaiting the famous Week-12 blood tests. Still looking forward to the "SVR24" test. But I certainly feel like I am cured. And even if I am not, I now know what it feels like at my age to live at least for a few weeks without that bastard virus.
Diagnosed Jan 2015: GT-3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9730

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Wow, that's great to hear, thank you. Mike I can relate completely to your pre-tx symptoms, and Vororo's too - I like the engine gears analogy :)
I'm hoping to achieve that sort of 'improved' state of wellbeing - have a while to wait - if at the least the unrelenting burning and numbness in my hands and feet stopped I'd be happy!

Really appreciate anyone's feedback, the positive and the negative, as I think we can all gain something from each other's experience.
All the best #love #flower
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9733

  • Ariel
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This all rings bells too loudly (lol) yep loving this
Ty to those who took the time out to write up these pooey things we have been putting up with and how hopeful the outcome and future is
Yep I want to run my business again and also play professionally again too
Yep need an income stream again too
Thanks so much for starting this thread Chejai x
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium ext.low +issues (rlps week 4 post tx, VL120,000) secondaries eg. adenomas.
pre sof/led VL 240,000 Fibrosc F0
Day 25VL <30
Day 32 UND
Week 10 UND
EOT UND ALT11 AST17 GGT19
SVR4 UND ALT 10 AST 16 GGT 13
SVR8 UND ALT <9 AST 16 GGT 15
SVR12 UND ALT 14 AST 19 GGT 12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST 15
Cured SVR12
Dysplasia Adenomas removed Aug '16
SVR24 UND ALT11AST16
Colonoscopy Clear Nov 2017
Lumpectomy Clear ‘18
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9764

Hi Not sure if this is the right place to be for my question...I have five days to go before I finish treatment. The past week I have felt incredibly down and unhappy....not my usual demeanor......very teary. Very anxious about my post 12 week blood test....not sure if it is maybe being anxious about the result...... :( Has anyone else experienced this?
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9766

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Hi Lynne, I have been discussing this recently and even brought it up with my consultant.

I am only just starting week 4 of tx and have already had niggling worries about coming off the meds!

I was reading the progress of another patient, a lovely lady who has really been through it over the years, (on another forum)
She got Harvoni through NHS and is now post treatment - She made a post re post-tx depression here : www.hepcukforum.org/phpBB2/viewtopic.php?t=13726

My consultant likened it to what she's seen with cured cancer patients when they've finished treatment and have been told it has gone.
She said the 'loss of the safety net of the treatment' can cause depression and anxiety in many and they are not totally convinced that the cancer has gone. In other words, she thinks it's mostly psychological. She also said that feeling better brings a high of it's own along with the reduction of inflammation (so a physical thing too). She's a very smart and open consultant, so she is probably right !

Now, my non-medical thoughts ;)
I have wondered, if these new 'smart' drugs have a chemical component of a feeling of well-being too, along with the reduction of inflammation and feeling better in oneself.

She said it's really important to take good care Of yourself at EOT - with diet, rest and gentle exercise etc and trying to do things which help to keep your spirits uplifted.

This is quite a new thing, EOT with these meds, so there isn't much 'data' - but as she says, she has clearly seen this with cancer patients .

So, plan some nice things to distract yourself, try not to dwell, eat healthily (she also told me to keep eating carbs on tx as I am craving them, but to reduce at EOT) and try to take care of yourself as best you can is her advise.

#love LG
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: 2 years 3 weeks ago by LondonGirl.
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9769

Thank you LG.....wow.....the comment about the "safety net" is pretty much how I feel.....I feel safe on the medication because it is keeping the virus at bay. Thank you for taking the time to answer my question in so much detail......I have been incredibly lucky given I have only known about the virus for 12 months and here I am nearly finished being treated for it.....so many others on the Forum have had so much more to deal with than me..... :(

Thanks again I and will post my 4 week post treatment results as soon as I have them.
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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Any Post-Treatment Reflections? 2 years 3 weeks ago #9770

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Well I finished today, about 12 hours before I posted this.
So to answer the question...

no, i don't feel much different than i felt 2 weeks after meds or 4 weeks or 8 weeks or now 12 weeks..

by 4 weeks i was und, maybe i was even before but only was tested at 4 (more like 5) so coulda all been gone at 1 or two, who knows?....will get the 12 week test next week.

I guess the only thing is i of course am concerned if its gone...for good...once and for all..
but the other thing is, this place has been FUN,
going to Australia was FUN,
getting better is FUN...so best wishes to all who come after me to follow the path to getting better.

and THANK YOU Dr. Freeman and GREG...I wouldn't be at this point if not for you two. If I could nominate you both for the Nobel I would
(I looked into it, I dont have the credentials, damn).
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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