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TOPIC: My parcel of Magic Pills has arrived!!

My parcel of Magic Pills has arrived!! 3 years 10 months ago #8694

  • Chejai
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Thank you GAJ and LG. Yes, as I was fuming on my walk home from GP, I kept thinking about her words and like you said GAJ, why can't she do my blood work and if anything is 'abnormal' send me to the hospital clinic. Every day GP's get someone with symptoms they want tests done and of course something comes back abnormal then if they don't know the reason they 'refer' them to a Specialist! What is the difference here?

I had a fantastic GP for 8 yrs, he moved away last August and hence I've had to find another. He monitored all my 'conditions' and because the Hospital Clinic never sent him letters or copies of my tests he never knew what was going on re the Hepatology, so he always ran his own thorough tests, regular Ultrasounds etc. He was awesome, I think I may travel to his new clinic as I can drive there and take my son with me, it's still a hike but not like the trip on the mini-bus to Brisbane! Otherwise, GP2U I suppose, it's just that it will cost min. $90 p/m for consult and I'm on a pension and savings are running low.
Nevertheless, I feel completely unsupported by this GP and think I should change.

Yes, LG I wish we could get together for a cuppa and a cry.
I agree, the crying is part of the grieving process and therefore essential to healing. So, I let those floodgates open
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!! 3 years 10 months ago #8696

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BTW, does anyone else have posts sometimes that the last couple of lines get chopped off?
Yesterday i had the 'glitch' with editing my Profile - works today - now it's chopped off the end of my last post, happened before.

Can't believe I was so angry yesterday I forgot the awesome banana - can't help myself now :lol:

#rant

All the best to 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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My parcel of Magic Pills has arrived!! 3 years 10 months ago #8708

  • Gaj
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Hi Chejai,

Great to hear you sounding more cheerful today. :cheer:

If your old GP is really within reasonable* driving distance for non HCV related illnesses then it may be worth considering changing all you appointments back to him as someone you know and trust with yours and.presumably your son's health. I suspect for you, once you get rid of HCV there will be less doctors visits but obviously your son will still need regular visits for a few years due to his age. A trade off between walking to the GP vs better health care as long as delays caused by longer travel distance won't cause issues for either of you.
Regardless of whether you take that path, I do think it would be a good idea to consider approaching him for monitoring during treatment anyway based on your available options.


*(for overseas readers: this is Australia so 'reasonable' can be sometimes be considered several hours if you don't live in a major city ;))
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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My parcel of Magic Pills has arrived!! 3 years 10 months ago #8709

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Chejai wrote:
BTW, does anyone else have posts sometimes that the last couple of lines get chopped off?

Errrr.....yes, here's what happened to me yesterday. :lol:



If you click on the pink edit button on the bottom right of your own posts you can go back into them and add in the bit that got missed.
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:
Last Edit: 3 years 10 months ago by Gaj.
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My parcel of Magic Pills has arrived!! 3 years 10 months ago #8736

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Chejai - mea culpa for my absence over the past week and finally getting to your thread. Brilliant that you've started tx now and are feeling the benefits already :cheer: Particularly great to hear you are sleeping better, despite your nerve pain...mine is of a far lower magnitude than what you must endure, those are some heavy-duty pain meds. Reading over your pre-treatment symptoms you've improved so much already! Really great to hear.

Fingers well crossed for the rest of your tx :) Apologies again for being late to the party lol
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
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My parcel of Magic Pills has arrived!! 3 years 10 months ago #8820

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Thanks GAJ, I was thinking the same last night. We'll make an appointment in a couple of weeks for my previous GP, do the trip and see how manageable it is. He is actually the only one currently that can see my son for anything beyond 'minor' because he has his history and new GP's won't complete any paperwork without knowing the history. So, we were planning a trip to see him for my son, I will make a double booking and discuss my Tx. He is the best, most knowledgeable, compassionate Dr I have ever had, the moment you walk in and sit down his attention is fully on me, he doesn't rush and look at the clock, he never dismisses my concerns. Honestly, having travelled around and lived in so many places as I have I truly have lost count of my Dr's. So, having him for 8 yrs was a Blessing #love
I don't believe for a moment he will not do my blood work because he was monitoring me for years because of the lack of communication with the Hospital clinic. I think I've got a plan! :woohoo: Then, Plan B is to see Dr James via GP2U!

Thanks for the tip re the Edit after post :)

Hey Zhuk, great to hear from you and I've been following your Tx thread too. Sounds like me 'always late to the party' :lol:
You seem to be going well on Tx too. I'm starting my 2nd week today Day 8 - still sleeping well but when I do wake in the morning I'm 'awake' and can't go back to sleep. I'm a bit 'wired' during the day, not as hyper as the 1st few days, but I still crash hard in the arvo and evening time I'm a couch potato :P
The 'sweats' not as bad now either, still suffering shocking nerve pain, numbness during the day(just so happy it's not waking me at night) but I am now doing a long walk in the morning as well as my usual late arvo one. My feet burn and ache but I just keep going anyway. Despite my prescribed meds - heavy duty Yes! - I actually don't take them as 'prescribed', I tend to wait until I'm crippled up in agony before I reach for them and never take Oxy after about 3 pm because I can't sleep. This is not the right approach to pain management, my old GP used to say, because waiting until your in agony is much harder to knock on the head :silly: Nevertheless, I'm paranoid about addiction - look at my history, it's warranted
#roflmao
Anyway, thanks again for the support, couldn't be doing this without it, Cheers #love #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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My parcel of Magic Pills has arrived!! 3 years 9 months ago #9220

  • Chejai
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It's Day 12 for me now and after around a week + of solid nights' sleep I have been suffering from a migraine the past 2 nights. Back to my typical, tossing and turning, burning and numbness of my hands and feet keeping me awake as well as a killer headache and nausea. I've had migraines for decades, so I'm no stranger, I was experiencing an intermittent stabbing headache for the past week but it didn't wake me.

I also had 1 night last week where I forgot to take my AD - Mirtazepine - before bed, as usual. I had a really bad night, the nerve pain, numbness etc, waking and dozing, wild, lucid dreams (not unusual). So, it appears that the reason I've been experiencing such 'solid' sleeping for around 6 hrs a night is more to do with the combination of the AD's and my new MP's (Magic Pills).

Otherwise, appetite normal, sweats decreased, increased thirst - water all day & night, herbal tea after dinner, 1 coffee 1st thing am; still suffering my usual nerve pain, numbness, burning & joint pain. Still having periods of energy, not as hyper, after taking my MP's and then crashing in the arvo, couch potato at night with extreme fatigue.

I have noticed a clarity and lucidity creeping in like the car windscreen slowly demisting. This is good! My moods have levelled out but I still feel 'teary' at times.

Anyway, that's me updating, wishing everyone else well on their journey. :)
#love #love to all!
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!! 3 years 9 months ago #9223

  • splitdog
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Cool. Today is day 12 for me as well. We should get our 4 week bloods about the same time?
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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My parcel of Magic Pills has arrived!! 3 years 9 months ago #9229

  • Chejai
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Yes, Splitdog. along as I find a Dr to do them :dry:
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!! 3 years 9 months ago #9308

  • Ariel
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Chejai wrote:
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.

H Chejai, thankyou for recording these sx I am very similar and we are both at the same day, slightly different meds and time frame and Gen of course. I agree, I have been avoiding watching the news, watching anything that is a downer, as I am aware of a kind of fragile mood that could easily turn nasty on me. Yesterday I happened to find myself at Gunna in the midst of that tragedy and have an imprint on my brain I have been distressed and think you are right the meds are strong, I also exercised two days and was exhausted. Nights are worse dang. that seems to come and go doesn't it? Still, we are going well, and I truly believe we can beat this beast. I want your sleeping vibes please! Night terrors are hitting me in the most vile dreams here...last night I was trapped in a movie theatre with Matthew Mchonaghy (sp?) and not in a good way lol no six pack thankyou and the dream was agro, and on repeat. No idea why the nightmare had to feature a film star (Dallas Buyers Club?) but he was in board shorts.... I seem to be also up and down with the sweats and yes it does seem to be weather affected too. Sharing is a great tool. I read the posts here and am less concerned. Built up anxiety over years needs to take it's time to shed from us doesn't it, as we go forward. Well over and out, onwards and upwards...hoping the Qld weather is kind to you, it is all over the shop down here
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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My parcel of Magic Pills has arrived!! 3 years 9 months ago #9462

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Hi Ariel, yes, the weather is all over the place here too. Stinking hot, burning summer days that suddenly switched to cooler, overcast and rainy days to spoil the extra long Oz Day weekend!

Well, I've entered my 3rd week on Tx, like you, the migraine finally subsided Monday but I'm not feeling 'better'. I feel really trashed and struggling to get up in the morning, my nights became restless and painful again and the wild dreams :ohmy:
Not exactly Matthew M - I have a 'thing' for him, so I wouldn't want him in any nightmares, nice lucid dreams perhaps :P

Emotionally, I'm still all over the place, I haven't watched any news because I do 'take it on', so I'm actually protecting myself. Avoiding people and social interactions really because I'm either getting really pissed off with them or I'm the usual sympathetic ear offering support and having the life sucked out of me. My mother finally called a couple of days ago, after a couple of weeks of Tx and no contact from family, wanting to pour out her troubles like usual. I very firmly pointed out how both her and my brother hadn't bothered to check how I was doing, knowing I'm alone here. They call me and lay out all their burdens, usually bitching about each other, I give them compassion, empathy and support but what about me -who can I call? Certainly not them! She managed to blame my brother ahhhhhhhh.
My poor darling son has to listen to his mother wandering around the house ranting - hang on wait for it -

#rant
I just can't help myself
#roflmao
Ok, I'll stop now.
Anyway, I'd be doing a lot worse if I didn't have this forum to come to. I feel better when I read how others are doing and I feel supported and not judged - which I am not used to at all. I've always been an open and blatantly honest person and that often incurs judgement and/or people running away :lol:

I read so much on here and then I can't remember most of it. This week I've been feeling the same as before Tx, constant fatigue, restless nights, sweats again, burning nerve pain etc. I don't know if it was having the migraine and I'm still recovering - they always take a lot out of me. I think I have read some people saying after the 1st 2 weeks they settle down and don't feel much different - can't remember where???
I'd like the energy and good sleep I was having to come back :)
Ok, I'm going to look up 'Gunna' to see what you were referring to...I'm back, cannot find anything for Gunna. Is it the actual name of a town? Google doesn't know it, so what happened?

Anyway, hope you're well today and anyone else reading this, wishing you well on your Tx #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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My parcel of Magic Pills has arrived!! 3 years 9 months ago #9463

  • Ariel
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Hi Chejai we have a lot more in common than just Day 16 ;)
I used the local slang it's actually Gunnamatta Beach
Pop that into your search engine
You can even see it on webcam on the surf websites too !
I have a thang for that Matthew too my aka spelling for him is Matthew McHunkofGuy
So mean of my nightmares to use him as an evil tormentor I swear I only ever looked at the six pack the olive skin and the tight buns in innocence ;) :evil:
We are having the same sx and yep I am hearing you about the other stuff
I shut facey down until yesterday because of exactly these concerns re trust and so on
Hey... doing only 84 days that means I am down into the 60's countdown days left
That feels good
Our next challenge is the 4 week bloods
LG has had a fantastic result from two weeks I got great support reading her blog
Sending aloha up north wish I had been there my buddies have all been surfing the superbank down at Kirra/Snapper omgosh the pictures are drool worthy
I'm so over having to slot my sport into my chronic fatigue it's gonna be awesome saying goodbye to the impression on my mattress
Thanks so much for your share Chejai I needed this today xxxxxx #love
Love and splashes
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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My parcel of Magic Pills has arrived!! 3 years 9 months ago #9474

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Hi Chejai and Ariel,

I felt very much the same as you and commented on here at about 2 weeks that I just didn't feel I could cope with company one weekend and hid away. At ten weeks now, those feelings and sides have greatly reduced and I find myself much more outgoing and social....but still with occasional lapses.
Just this last weekend I spent the time with two old friends I hadn't seen much of for 25 years (Ariel; at the traditional annual foreshore camping spot just across from Gunna.....I thought you were in southern NSW until you mentioned that ;)) We hung around the beach and campsite and saw a couple of cool musos in a little bar on Sat night and it was just so nice to relax and reconnect with such dear friends. But even though we didn't do a lot, by late Sunday arvo I was shattered and just needed to get home to my space and hibernate.
Then yesterday I was good to go again so down the local park to celebrate Australia Day with the Black Sorrows and Darren Middleton with a nice dinner in between with other friends. I am really starting to enjoy this getting out and seeing people and events that I have found too exhausting for the past few years. Having a life is so much fun! :cheer:

So you will probably have ups and downs through treatment and it gets physically and, possibly even more so, emotionally tiring at times but hang in there 'cos it does get better and easier and much more rewarding as you go. :+1: :+1: :+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:
Last Edit: 3 years 9 months ago by Gaj.
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My parcel of Magic Pills has arrived!! 3 years 9 months ago #9587

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Gaj wrote:
Hi Chejai and Ariel,

I felt very much the same as you and commented on here at about 2 weeks that I just didn't feel I could cope with company one weekend and hid away. At ten weeks now, those feelings and sides have greatly reduced and I find myself much more outgoing and social....but still with occasional lapses.
Just this last weekend I spent the time with two old friends I hadn't seen much of for 25 years (Ariel; at the traditional annual foreshore camping spot just across from Gunna.....I thought you were in southern NSW until you mentioned that ;)) We hung around the beach and campsite and saw a couple of cool musos in a little bar on Sat night and it was just so nice to relax and reconnect with such dear friends. But even though we didn't do a lot, by late Sunday arvo I was shattered and just needed to get home to my space and hibernate.
Then yesterday I was good to go again so down the local park to celebrate Australia Day with the Black Sorrows and Darren Middleton with a nice dinner in between with other friends. I am really starting to enjoy this getting out and seeing people and events that I have found too exhausting for the past few years. Having a life is so much fun! :cheer:

So you will probably have ups and downs through treatment and it gets physically and, possibly even more so, emotionally tiring at times but hang in there 'cos it does get better and easier and much more rewarding as you go. :+1: :+1: :+1: :)

Thanks GAJ - well you were probably one of the posts I read but couldn't remember where - about the 2 weeks mark :P

Sounds great that you have been getting out when you can, your OZ Day - Awesome!! Good for you, ok so maybe this week is my low and things will improve.

Another day struggling to get up but I at least slept soundly last night. Today, I'm confused and doing strange things - went to put water in two bowls, for my birds, and Lori powder in another but put the powder in the water. Kept getting my words mixed up - can't get the right words out of my head, doing spoonerisms - my son loves when I'm like this, he thinks I'm hilarious :lol: But I feel distressed :silly:

I said to him I need a Reboot because I'm having a 'Brain Fog', he thought I said 'Brain Fart' :lol: So, every time I said or did something mixed up he kept saying, "Oh, Mummy you're having a Brain Fart again!" Laughing himself silly
#roflmao

Aching all over and feeling very fatigued, hope it passes.

Ariel, I did actually come across 'Gunnamatta' when I first Googled 'Gunna' - I thought it was a colloquialism - then I saw the 'wanna surf' link and the great pics and realised it was real and that's where you are :lol:
Hope you're doing better #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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My parcel of Magic Pills has arrived!! 3 years 9 months ago #10259

  • Chejai
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Well, I'm half way through Week 4 and since my new GP won't do any blood tests for me, I've contacted the Clinic where my previous GP moved to, he's on leave until end of the month but doing some weekend work at another clinic. I've managed to get in on Sunday, 14th Feb. I know he will support me, as he has monitored me for 8 years already. But won't have any results until week 6, probably.

My sx have remained consistent in the last couple of weeks.
* I have a bit more energy than pre-tx during the day but very tired and lethargic in arvo/evenings.
* I am sleeping very soundly, although I 'snap' awake around 5 am, to take my dog out, then go back to sleep easily and 'snap' awake after about 2-3 hours. Very wild, lucid dreams - I'm remembering and 'feeling' all the details, which is unusual because I often only remember bits and pieces and forget as the day goes on.
* Some nights, e.g. very hot ones, I can't get to sleep and my mind is wired and my body is in pain.
* I still have the burning, prickling and numbness in hands and feet 24/7.
* Intermittent sharp, stabbing headaches from base of skull upwards - occurring less frequently.
* Severe sweats and dehydration, I always drink lots of water but this needs electrolytes to improve, otherwise I'm very dry, skin and mouth, dizzy and weak.
* I still feel very emotional and teary at times, sometimes over a song, a memory, a news topic or just generalised and no associated thoughts.
* I have been having short-fused outbursts but resolve quickly; not feeling sociable at all.
* I've improved regarding anxiety - no more persistent low grade anxiety and agitation; but still have acute episodes that are resolving quicker than usual. Depression still present and having my typical highs and lows - some very low.
* Persistent bloated abdomen, no pain, just discomfort; GI problems and restricted diet as before.
* Kidney pain comes and goes.
* Blurry vision, sometimes so bad I can't drive.
* Severe fatigue and going on 'the nod' -again, very scary when driving.
* Appetite normal to low and craving sweets at times which is not normal for me.
* Some days clear-headed and others still very brain foggy and have speech problems - can't find my words and things come out all jumbled up.

I do feel reassured reading other people's posts regarding their physical and psychological symptoms, knowing I'm not alone in this experience.
All the best to you all #love #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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