emo Joan Started treatment

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6 years 7 months ago #3018

Awesome news everyone, sounds like you are are all finding the meds tolerable and reasonbly easy to live with. Hope your results bear fruit down down the track with SVRs...so pleased for you all :)


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
The following user(s) said Thank You: Lynne-Francis-facebook

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6 years 7 months ago #3021

Hi Joan et al,

So pleased everyone is coping despite a few side effects. I am now Day 6 and doing well although it's probably my tiredest day partly due to a 4.30 awakening. I am waiting to see if it becomes a bit of a pattern. Like you Joan I'm also trying to be good to my body and my poor old liver with good clean food and no alcohol etc. I've found it easier if I remove myself from socialising too much at the moment. Hopefully I shall re-emerge HepC free at some stage down the track!

Coral


G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...

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6 years 7 months ago #3257

Hello All
I went to have my first bloods yesterday at 14 days into treatment. It was a liver function test and it came back normal!! Yahoo!! its the first time in years n years (12-13) I have had a normal Alt 25 Ast 30!! 14 days into treatment Whew that is amazing!!!

I was surprised as I have been feeling fatigued and have insomnia so I haven't been feeling too good but the sides are still manageable by adapting my life style..that is resting when I need to and not pushing myself. I was uncertain the test would be normal as I didn't feel well healthy and bounding with energy.

My next bloods are in 2 weeks (week 4) and then I will have a viral load which hopefully will confirm the absence of the virus. All in all this is the best thing I have done..I am very proud of myself for staying with my decision not to be pushed/scared into Interferon over the years.
When I started to progress, from F2 to F3 fibroscan 17, 12 months ago, at times it was stressful not buckling under the pressure to go on Interferon. Which was really hard as at one stage my specialist said I may have liver cancer and thankfully I didn't. He then said I should start treatment immediately as the cells in my liver where enlarged/abnormal and Interferon was the best option as it could take a long time for negotiations with Gov n Gilead. …..And now thanks to having the option to make my own informed decision through Fix Hep C..Normal liver functions!! WhoooHoooo!!


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
The following user(s) said Thank You: DrJames, Paul-Jarman-facebook, Jan-Dowling-facebook

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6 years 7 months ago #3262

Yay Joan!

That is such great news!! It's still hard to believe that such a result is possible after 14 days. The meds and your body are working really hard to get rid of the virus.

Now that I am one week in and seeing your results I am so happy that I also resisted the interferon road.

Hang in there with the side effects.....I'll be looking out for your test results in 2 weeks time.

Cheers!

Coral


G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...

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6 years 7 months ago #3264

Thanks Coral

yes its great news and I wish you well with your first blood test. The side I am having are nothing to what I would have had on Interferon. I am just going with the flow!!


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015

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6 years 7 months ago #3265

Outstanding news Joan, that is awesome! So happy for you :)


And absolute props to you for resisting the pressure to go on int&riba...that must have been incredibly stressful. Wow what a validation you have now...sincere congrats!


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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6 years 7 months ago #3268

Yes it's a VERY encouraging sign isn't it Joan, I'm so happy for you. Hoping for more good news at 4 weeks.


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.

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6 years 7 months ago #3270

Good news indeed Joan, some relief at last.


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV

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6 years 7 months ago #3389

Hello Joan!! So so happy you're doing great now!! You sound good!

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6 years 7 months ago #3427

That is fantastic news Joan, re your blood tests. Also sounds like things have worked out better than if you had of been pushed down the inter/riba road. So the insomnia you're experiencing - is this something you have had before treatment or now as side effect? Others are mentioning this too. I've always been an insomniac, so I'm wondering if it will stay the same.
Great to hear things are going well, Good Luck!


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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6 years 7 months ago #3546

Hi Chejai

Pre Treatment: Over the past few years my sleep patterns have improved. I always go to sleep, I may wake up but will go back to sleep most times unless I have a lot on my mind. I don't drink coffee (never have) and I don't eat too late or sugary things. Thats when my sleep started to improve when I cut out any stimulants sugary or frutose. I drink tea but not late usually in the morning - early arvo. Sleep is the key. If I have a good nights sleep I usually feel reasonable the next day.

On Treatment: From my first dose I have had sleep disturbances. This is very different from my 'normal' sleep. I can go to sleep easily, however, at around 3am, after approx 3-4 hours sleep I wake up and cannot go to a deeper level of sleep. Usually during this time I will drop in or out and have very vivid dreams or I realise I am not really asleep…very strange. I am not anxious or worried, I just can't seem to drop into a sleep. The first week I had mixed responses when I woke up. Sometimes I felt ok but after awhile I felt fatigued and other times I felt like I could go straight back to sleep which I didn't do.

Now I am into my 19th day the sleep is much the same..can drop off to sleep..but wake up after a few hours. Somedays are better than others. I am very flat emotionally and tired and am not sure if its fatigue or sleep disturbance or both. I guess it doesn't matter. I can manage to do most things (cook, housework, shop, blah) but have cut out socialising as I am feeling quite raw and vulnerable at the moment. Also I don't really want to talk about treatment with caring friends. I am open about having Hep C and that I am on treatment. I have a supportive family and friends which really helps. Although I am not feeling on top of things at the moment this is all manageable and I am hoping that things will turn soon and I will feel a new lease on life. Even though my LFT's are normal and I am happy about it I don't really feel fabulous.

Everyone's experience is different. There are some people posting that they have no side effects. Others no insomnia. Others who feel energised early into treatment and then get side effects. There are similar patterns but everyone is different and you won't know until you start. From what I know there are side effects and they do have an impact but are not as brutal or debilitating as Interferon. Its good to get as much info as you can and prepare yourself…hope this helps.


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
The following user(s) said Thank You: LondonGirl, Chejai

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6 years 7 months ago #3552

Good, good and good some more!!
A lot of good books out now too!
Now we can read them for fun instead of escape.
Hell, escape is fun now!
Way to go!
Mike


This email address is being protected from spambots. You need JavaScript enabled to view it.
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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6 years 7 months ago #3561

Hi Joan,

Thank you for sharing a little of how you are currently feeling.

As you say, we are all different and I'm sure that applies to emotional as well as physical side effects of treatment. Many of us here have lived with this virus for decades and I believe that over time our bodies and minds have reached an accomodation with it. Certainly not a beneficial one for us but a necessary one to allow us to survive and function at whatever level we are capable.

Now that we have these drugs and they are stripping the virus from our bodies, it is not unreasonable to expect that our bodies will need some time to adjust to no longer having to defend themselves 24/7 and switch to the process of healing all the physical damage done over the years. In the same way, our minds will take time to adjust but the mind is complex and while we may be consciously happy and glad of a cure, at a subconscious level there may be doubts and maybe even some feelings of "loss" that we will come to terms with as our treatment progresses. This is natural and to be expected and part of the healing process and we will all experience it in our own ways but sharing it here can assist the process and also help others.

G

PS I also avoided a social contact on the weekend that I knew would require (well meaning) detailed discussions about my treatment that I just didn't feel capable of participating in right now. But that time will come. :)


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: 6 years 7 months ago by Gaj.
The following user(s) said Thank You: Jan-Dowling-facebook, Jimmy6429

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6 years 7 months ago #3568

Thanks G for your feedback yes I have been living with the virus for decades, consciously - subconsciously things are definitely changing. And no matter how I feel I am prepared to go through whatever it takes to live a HCV free life.
Grief is part of the process although I am not sure thats what I am experiencing. Frankly I don't really know. Just I have felt livery, foggy and flat the past few days. Although today as the day is progressing those symptoms are shifting and I feel mentally clear as a bell…sharp as a tack..thats a surprise and I don't know if it will last or not I am just enjoying what is there and the relief from brain fog. Its not until the symptoms have gone that I realise how much impact they have or how constant they are as I am so used to them.

I have imagined what it will be like to feel well & healthy. To most people who know me I am always debilitated and limited either I am having a good day or a bad day. My whole identity has been centred around this persona, however, I can see myself having clarity of mind, strength of body and energy. Thats what I want and hope for however it may take time.


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015

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6 years 7 months ago #3571

Hi Joan Glad to hear your liver function tests are good........I am nearly 14 days in and have had insomnia from the first dose however I seem to be getting "used" to it. Back at work full time this week..first day was horrendous, sooo tired but yesterday I felt great...up and down like you are describing it. Looking forward to hearing your 4 week results. I get my 4 week blood test done in a fortnight...fingers crossed.

Stay positive and well.

Lynne


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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