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My parcel of Magic Pills has arrived!! 6 years 8 months ago #7979

  • Chejai
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Ok, that's weird, sorry LG I was quoting part of your post and my comment/query has ended up in the quote. I deleted the end phrase so it deleted the code.
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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My parcel of Magic Pills has arrived!! 6 years 8 months ago #7999

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HI Chejaj, that snapping awake thing happens to a lot of us, def to me, like somebody turning on the light switch after only 3, 4 hours of sleep...nto like a normal wake up at all, just like BOOM YOU ARE UP AND YOUR EYES ARE OPEN!

it settles down some after awhile, but stilll happens to me some 8 weeks in...I had to resort to some lorazepam for awhile just to get some zzzz's, cause i have a work schedule and I cant be awake all night and then go in and crash during the day.

But, its really the only side effect I ve had.
Have fun, get better.
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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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8050

Hi Chejaj,

a lot of the 'side effects' mentioned on this forum seem familiar to me. What I found is that they were so indistinct that by the time I could put a finger on them, they had gone.

By end of week 1, I had discovered a life free of fatigue. The wanting to have a snooze come back later though - because I was more active? Now I am again fatigue less which is good as after all the rain the yard is overgrown.

Maybe there is some emotional catchup as well. Prior to going on treatment my AFP levels were high and my G.P. concerned about this being real bad news for my liver. Last year I was focussed on how I could manage for my family as I felt my working career was going to be very restricted. Now it isn't (I hope).

With treatment and the LFT's looking more like normal (after 25 years) you get the idea that there is some silver lining. It is always then the submerged feelings of grief will surface?

These observations are just mine and tempered by my own ability to quickly turn up at my G.P. if I sniff something is going wrong for me.

I also think this forum is a good safety net for people on treatment - you can voice a concern and others will quickly offer some advice/explanation from their own experience/learning, and most importantly a heads up that you should see a medico if needed.


Best wishes on your journey


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8113

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Yes sabrecat I was thinking about the 'grief'- 'relief' - aspect yesterday because I've had some 'weepy' moments set off by 'old songs' and 'telling my story'. I feel like I'm fighting it hard not to break down crying, I'm grieving over the brother I lost (41yo), the cousin I lost (51yo) and the brother who's dying (51yo) and my father who also died way too young (51yo). I have gotten used to feeling like 'crap' and getting worse in past 2 years and thinking - OMG, is this it? Is this how I will see my days out? Now, the prospect of being virus-free and have better health and energy again - it's a bit overwhelming.

Yesterday's Day 2, continued to be 'hyper', very dehydrated - all that sweating! - normal appetite, sharp stabbing pains in kidneys, intermittent headache very sudden stabbing-type, eyes sensitive to the sun and difficulty focussing on things indoors - blurry vision.
I totally crashed around 2:30 and had to put the car a/c on high in my face to keep me from nodding off at the wheel around 4 pm - very scary!
I was really fatigued until bedtime and was out so quickly I don't even remember trying to fall asleep - like I usually am.

Today is Day 3 and has started out quite differently, felt like I'd been run over by a truck this morning and dragged myself out of bed at 8am, otherwise I think I'd still be there! Still got sweats, light sensitivity and feeling very sore all over and fatigued. My abdomen is very bloated and tender too! I'm still feeling 'dry mouth' and dehydration.
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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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8454

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It's Day 5 and haven't had as much 'hyperactivity' over the weekend.Going to bed completely exhausted though so sleeping really solidly and haven't woken pre-dawn for days. Cool southerly change on Friday night has meant the sweats not so severe, just random waves of it. Still bloated, uncomfortable belly, intermittent sharp stabbing headache. Appetite normal and not getting up constantly to go to the toilet at night despite my herbal teas all evening!

Emotionally up and down though and actually feeling very depressed past 2 days.
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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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8466

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Chejai, yes some days can be exhausting. I think that we have to do whatever we can to make ourselves comfortable and rest up whenever we have an opportunity. I find it helps to drink lots of water and for me headaches and joint pain seem to come and go. I hope you have a better day tomorrow. X #flower #flower
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
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Last edit: by pat1. Reason: X

My parcel of Magic Pills has arrived!! 6 years 8 months ago #8469

Hello Chejai, feeling under the weather and flu like is quite common during the first few days. For some it lasts longer than others but with any luck you're through the worst of it and things will steadily improve.

A trend of getting better each day is good.
YMMV
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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8473

Hello Chejai,

I enjoyed the Southerly change Friday night too - what a stinker the day was! We must live in similar latitudes.

I took the last of my first 12 weeks Sof/dac this morning and enjoyed a good time with family and some friends on my birthday!

The odd physical feelings you talk about are familiar but a distant memory now. Appears you too are on the mend!

The emotional stuff? I am lucky enough to have not been touched by losing close relatives; the now feeling a bit overwhelmed is something I share though. I know that my liver is damaged, but being told last week my VL=UND, it is also a like being set free in the middle of the night on a dark country road by kidnappers!

I was/am grateful for all the people who posted their experiences on this site about their side effects (you too) as this normalised what was happening to me. Look forward to reading your continuing posts as you get better.

Yours J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Last edit: by sabrecat. Reason: typos

My parcel of Magic Pills has arrived!! 6 years 8 months ago #8474

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I hope you're feeling a bit better Chejai. I think with the extra energy I tend to over do it and then feel a bit exhausted for a few days.

Hope you have some brighter days ahead #flower :)
3a F0 TX Naive
Started Tx 12/12/2015 Kingswood Sof/Dac

Pre Tx - ALT 71 AST 40 V/L 9 million
Day 11 - ALT 12 AST 15
4 week - LFTs normal - detected (same sample sent for v/l showed undetected) :/
6 week - UND
12 week EOT - UND
SVR4
SVR12
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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8522

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Thank you everyone for the reassurance. Can't imagine how much harder it would be without this forum.
I have had another solid night's sleep - this is amazing! I have lived with insomnia since I was a teen, actually spent many years working nights because that was when I was most energetic and slept in the days.
I'm also noticing that my usual state of anxiety and agitation has subsided. I stopped drinking before Tx and interestingly have had no desire at all. I expected it to be an effort to resist but the lack of increasing agitation that typically occurs most days isn't there and I don't feel the 'need' to calm myself with a few wines. I'm enjoying a fabulous range of herbal teas that even my son is loving the ritual at night :)

I had a 'low' over the weekend but feel better today, the weather has eased and I could get out for a walk - more like a 'dragging' of my puppy around the waterfront, she's used to my son letting her pull him around, I'm trying to train her to walk along side :ohmy: :lol:

Today is Day 6 and I'm off to see my GP later and inform her I'm on Tx and ask if she'll do my blood work at 4 weeks etc.

Each day is a new day and I'm taking it as it comes.

Sabrecat - Happy Birthday to you! Awesome to be EOT too! :woohoo: :cheer: #love Have a Great Day!!!
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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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8564

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Oh, great my day has turned shitty after seeing my GP. She won't have anything to do with monitoring me i.e. won't request pathology tests at 4 weeks etc. Ever since she spoke to the Specialist from the public hospital clinic I go to in Brisbane she said that he told her if I decided to go via the Generics myself that she 'couldn't monitor me because she doesn't know anything about these drugs and isn't qualified.' She said that if my results came back 'abnormal' that she wouldn't know what to do and she has a Duty of Care to do something! She went on to say that even though the Gov has announced GP's will be able to write scripts for these DAA's soon there's a misconception that people assume any GP can write a script. Apparently, only GP's 'experienced with HepC treatment and these drugs' will be allowed to write scripts and monitor. I wanted to know how many GP"s could possibly be experienced with these new DAA's and hepatology. She couldn't answer. Because we all know 'our' Dr James Freeman is a rare breed!
She told me I would have to do the trek to the public clinic every month instead, they will be happy to monitor me. That means organising Respite Care for my son and getting on a Volunteer Bus on the island that takes people down to Brisbane for their medical appointments. It's a whole day, hours of travel and hours of sitting at the hospital. I take days to recover from the pain, arthritis and nerve impingement is so aggravated by sitting and bouncing around on a hard seat in a mini-bus.

Feeling very p***** off :evil:

So, probably other option is doing tests through GP2U consult I think.

And now I go to edit my profile and it's deleted everything but 1 line, tried 3 times. I've messaged you Paul re this.
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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My parcel of Magic Pills has arrived!! 6 years 8 months ago #8573

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Chejai wrote: She said that if my results came back 'abnormal' that she wouldn't know what to do and she has a Duty of Care to do something!


OMG! I wouldn't put someone like that in charge of a chook raffle! <Insert man shaking fist emoticon>

Chejai,

If this person calls themselves a medical professional they are sadly mistaken. What would she propose to someone else who's test came back abnormal for something else? "Oh, I'm sorry, I don't know what is wrong with you so my duty of care prevents me from helping you." Has she never heard of referrals!!! Most medical professionals have been using them for ailments they don't understand themselves since the dark ages. There is uninformed, misinformed and sheer bloody stupidity. I doubt you need to guess which I think fits your GP.

#rant


I'm not sure of your location given your comment about an island but can I suggest you find yourself a new GP long term if at all possible as obviously your current one does not have your health or best interests at heart. And certainly consider GP2U for your monitoring in the meantime.

And please try not to worry about this, it will all work out fine in the end. :)

<edit> on calming down and further reflection, I doubt your GP is uninformed, misinformed or stupid. However I do believe that she is trying to punish you for not doing as she told you by making you travel to Brisbane for monitoring. Given that you are an adult making an informed decision about your health this is really unacceptable behaviour in this day and age so my recommendations stand.
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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Last edit: by Gaj.

My parcel of Magic Pills has arrived!! 6 years 8 months ago #8583

Good morning Chejai, ( Re GP2U app) I am on ipad. Will look & come back & edit. Just got to remember my password heh!
Will drink coffee and return :)

(edit) As predicted, forgot pword, Will return when recovered
(edit2) Sorry Chejai, I blame it on the brain-fog - I did upload medical hisory in tools, but not full blood test results. There is room to add a few bloods that are out of sorts there though.
I must have emailed Dr F the full kaboodle & forgotten that I did that
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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Last edit: by LondonGirl.

My parcel of Magic Pills has arrived!! 6 years 8 months ago #8584

Hey, I have also been emotionally sensitive. Can't deal with anything sad or bad on the news, films with upsetting scenes etc or bad drivers on the motorway ! Thinking I have forced myself by way of mental survival for so long, stayng strong for myself & my responsibilty to others & treatment has let down some barriers. I have also experienced much pain over ill loved ones, including the passing of one, My advise? Let those tears flow, it could be part of your healing and letting out all that stress and tension.

Sometimes, I wish we were all closer and could pop round to support each other with a cup of tea. #love
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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Last edit: by LondonGirl.

My parcel of Magic Pills has arrived!! 6 years 8 months ago #8586

Even if your GP is not playing ball, I would print-out Dr F's 'GP Cheat Sheet' and pop it in an envelope.
Not knowing much about it, is not an excuse for refusing 'Duty of care' - Can you get another GP?
After all (sung to the tune if a famous Beatles song'
" All you need is bloods" ;-)

I know how depressing it can be when medical professionals let you down & don't seem to care, I have had a ton if it and when I have the time, will document it on here.
I got there in the end, finding a GP & a new supportive consultant, Don't give up !
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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