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27 November 2015 at 6:32 am #4738
Hi Jimmy6429
Glad to hear the cognitive issues are getting better – which seems to echo what lots of people are saying. I am keeping my fingers crossed that this will happen to me too!
I am still weeks off getting the meds but hearing peoples experiences is really heartening. I have gone from feeling anxious about it to actually looking forward to starting treatment.
Thanks heaps
Age 51 Genotype 3 since 1985, F3-F4, VL 5.3 (Nov), Tx naive.
Ordered Sof/Dac from Buyers Club 16 Nov which arrived 17 Dec, started tx 20 Dec27 November 2015 at 6:50 am #4740Hear you on that Browny.
It is very heartening for those of us waiting for the meds to roll in, and to be able to share in the success stories so many are contributing here…I’ve also gone from a slight apprehensiveness to positively looking forward to it too. Only query I have is I found out yesterday that I will have to have half my thyroid removed while on treatment, but as far as I know no antibiotics etc are contraindicated with sof/dac. Although I kinda feel like locking my expensive meds up in the hospital safe while I’m in there
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 2627 November 2015 at 7:44 am #4744Not long to go now Zhuk and I would only take in to hospital what you need with your scripts take photos of the bottles etc etc bugger risking the hospital losing them.
cheers
Two time relapser.
SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeatedGT 3 – about 28 yrs with HCV
27 November 2015 at 7:56 am #4745Yeah Paul I was thinking of that heh! Usually you are required to bring bottles/tabs complete in packaging but I’ll put it to the staff when I have the pre-op appointment. Good point on the photos too, will do. Cheers
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 2627 November 2015 at 8:12 am #4746Or leave the rest at home safely and just take exact amount in bottles that you need.
Two time relapser.
SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeatedGT 3 – about 28 yrs with HCV
27 November 2015 at 8:18 am #4747Damn that’s an even better solution, many thanks Paul. Should only need two days supply
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 2629 November 2015 at 11:50 am #4812I am 20days in on sof/dac and I struggle terribly every day. Extreme fatigue, breathless. I do very physical work 10 hours a day, 5days a week. I weigh under 50 kg. I can’t afford a day off. On the up side I am sleeping very well, though I think it is sheer exhaustion!
Hoping every day like this will bring me closer to the day I feel half normal. I’m so looking forward to feeling a bit of energy. Most days I feel like crying by 10 am, as I don’t know how I will make it through the rest of the day.
So happy that so many people are having a really positive response. Just wondering if anyone is struggling badly also?29 November 2015 at 12:34 pm #4814Hi Desley, sorry to hear you’re struggling at the moment
But 10hrs is a hell of a workload…and I think your light weight might have quite a bit to do with the sx too – in effect you are getting a considerably higher dosage than is usual per kg/bodyweight. I’m about 50kg and expecting more side effects than the average person when I start treatment…but I don’t have to get through the sort of physical strain you do. Your body is a mini warzone atm as your immune system is fighting to kill the hep – it wouldn’t surprise me that such exertion would make it tough. Be interested to hear what those on treatment think as well.
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 2629 November 2015 at 3:45 pm #4820Hello Desley,
Try this:
Take 1/2 the dose of Dac (30 mg Dac) for the next 2 days. Either 1/2 the tab or tip 1/2 out of the capsule.
I have several < 50 kg patients who had to reduce to Dac dose (temporarily) to make it tolerable.
YMMV
29 November 2015 at 8:34 pm #4835hi Desley & welcome to the forum,
Great you’re on tx & getting rid of HCV, congratulations!Doing 10 hours a day of physical labour would have a severe affect on any healthy person, never mind on someone with liver disease & on serious medication. Are you being monitored by your doc ? maybe is a good idea to have full bloods tests done to exclude other concomitant health problems such as hypothyroid, anaemia, heart problems, just a few conditions springing to mind that could manifest as tiredness & breathlessness.
Is your liver disease advanced? fibrosis? cirrhosis?
I hope you’ll feel better soon,jolie xxx
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA – UND. – down from 2 ML
9 weeks HCV PCR RNA – UND.29 November 2015 at 11:24 pm #4838Hi Jolie, Thankyou. My bloodwork has been fine. No anaemia, although this is something I’ve always struggled with, b 12 good etc.
I haven’t seen the gp since starting meds. My specialist isn’t available until late January. I received my prescription from James Freeman.
Yes, the work is the problem, but I see no way around it, I’m just waiting for the day I feel better.
I’ve had this for 19 years, 1b, fibroscan was a 14,so am on meds for 24 weeks. I will get my levels checked in a week or so.29 November 2015 at 11:29 pm #4839Thanks, I will try this. I just don’t want to do anything to jeopardise the effectiveness of the meds. Though I don’t know how long I can keep this up. If these side effects stay for the 24 weeks there will be nothing left of me!
I will let you know how this goes. Thank you again for all you do. I’m really grateful to have the opportunity to be on these meds.30 November 2015 at 2:10 am #4844i Desley, Sorry to hear you’ve been suffering on the treatment.
Do you mind me asking? Were you low weight before you started or have you lost more?
(I am 43kgs).I hope you start to feel better soon. Keep the faith.
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 HepC30 November 2015 at 2:15 am #4845Hi, I have always been thin, though I haven’t weighed myself since starting treatment. I have zero appetite usually, even less on the meds. Do you feel bad side effects?
30 November 2015 at 6:03 am #4853Welcome Desley,
Congratulations on taking charge of your health and starting treatment.
As others have said, working 10 hour physically active days is going to be tiring even without hep c to contend with. As you are now on treatment and do have a high daily energy expenditure I wonder if it may be appropriate for you to review your current diet?I say this because many of us have adopted very low fat, low animal protein diets to protect our livers as best we can by reducing their workload. What I jokingly refer to as “my mung bean and kale diet”, which has definitely helped me cope but can in all honesty get a bit boring and unappetising at times.
But now that you have been on treatment for three weeks I would think based on others experience that your liver function is probably either close to or within the normal range and more capable of processing fats and proteins. Your body will also be looking for higher levels of these to assist in the healing process but may be competing for them with your high energy requirements.
I’m not suggesting you go silly on high fat or protein foods and certainly not trans fats but rather that there may now be opportunities to spice up your diet with some additional good fats and lean proteins that will make your diet more appetising and while benefiting your recovery at the same time.
G
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
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