Taking longer that expected

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3 December 2015 at 1:46 pm #5176
SueHealth
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@suehealth
You: SueHealth
I have been on the Harvoni combination for seventeen days. I have heard that people have been better after one week, I am still exhausted and have had no change in my condition. I was infected 40 years ago and I have Geno type 1. Has anyone had their symptoms relieved after 17 days?
3 December 2015 at 1:59 pm #5177
Alsdad
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- Guardian Angel
@alsdad
Welcome to the forum Sue.

Some people seem to go through the treatment with very little side effects. Others struggle a bit for a few weeks. And a few struggle most the way through. The good news is that level of side effects don’t seem to be an indicator for effectiveness of treatment. Your first treatment blood tests will tell you where you stand, and they will give you confidence.
3 December 2015 at 3:06 pm #5180
Gaj
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@gaj
Hi Sue and welcome,

As Alsdad says, it does seem to vary. Chatting yesterday I posted that it was the best I’ve felt in years. That is true but as I corrected later, it’s all relative and after two weeks I’m certainly not ready to run a marathon yet. As my panel says, I’m an optimist so tend to overplay the positives and ignore the negatives.

But after 17 days all the scientific data and our anecdotal stuff here says your liver will be functioning much, much better. When are you getting your first tests? I think you will be pleasantly surprised by the improvements there even if you aren’t feeling them quite yet.

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
3 December 2015 at 3:07 pm #5181
mgalbrai
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@mgalbrai
Hi Sue,:
Well, We have some things in common both: gt 1a, decades of disease and fatigue and taking the same tx. I am on day 42. I had a dull headache for 3 days. No other side effects. I started noticing an increase in energy about, well, 17 or 18 days into tx. It was a subtle uncrease, but I have been feeling a little better each day and that adds up! I teach 9th grade and that has been a real challenge the past 3 or 4 years. I thought I was going to have to retire early. Not anymore! I come home after a long day of “stamping out ignorance” with some stomps still left in me. I tested F-1 (biopsy) a year ago and my enzymes were ALT: 212, AST: 124. My v/l was 4.9 million.
My 26 day (generic harvoni) labs: ALT: 17, AST: 16, v/l: Und.
So, you have a lot to look forward to. Looking back, I believe many of my problems were caused by stress and worry. They were still problems though-just as real as a broken leg. After living my entire adult life being sick, I am now virus-free and hope to stay that way. My mind is in a much better place and my body can focus on healing instead of fighting.
The same goes for you.
Good Luck and welcome to the best place, well, in the world for people who are making this journey towards “Normal”. There are some characters here, so watch out!
What would you expect from the descendants of a bunch of convicts living on an island in both wrong hemispheres??
Personally, my ancestors were hung in Scotland. They were simply too mean to put anywhere but at the end of a rope. I am descended from the smart ones who escaped. That is why I am so smart.
Mike

Curehcvnow@gmail.com
http://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
3 December 2015 at 3:09 pm #5183
coral
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@coral
Welcome Sue,

Alsdad covered it well – everyone seems to be different. I am three weeks with minimal side effects. I think I feel clearer headed with more energy but having had the virus for so long I sometimes find it hard to know what “feeling better” feels like.

Hope things lift a bit soon for you.

Coral
3 December 2015 at 5:01 pm #5186
poodle
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@poodle
Hi Sue Iam the same as you 1a 35 years f2 on harvoni 7weeks from 635,000 to 0 after 4 weeks undetectable. First week felt a bit weird and drugged after taking tab at night after dinner. Tinnitus kicked in and went up in volume. Weeks 2 to 4 great better energy and better mind set. Now in week 7 insomnia a bit most nights 1am to 2am for falling asleep. Bit tired now in general during the day. But you would have to think that is because of the late nights. Really no big deal, just getting on with the day to day feeling pretty confident that all is well. No headaches or sick feeling in anyway. I think that it might be good to think about this in shifts and the degree of effects will probably change a little bit every couple of weeks or so. I dont imagine you are going to feel tired the whole time. Also your level of fibrosis might come into it. Best of luck Jill

Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 … waiting for svr 24
I now have SVR 36 weeks.
3 December 2015 at 11:26 pm #5199
zhuk
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- Guardian Angel
@zhuk
All great points made here, Sue, and welcome. 17 days out of 84 (presuming you’re doing the 12 wk course) is only just getting started really, I wouldn’t have any concerns. Also remember that us GT1’s are the most least responsive genotype to treat, so we might respond a bit slower than others but there’s no reason to think the eventual outcome will be any less favourable. Alsdad makes an excellent point here “The good news is that level of side effects don’t seem to be an indicator for effectiveness of treatment”

Don’t expect anything specific to happen at a particular stage, just go with it and I’m sure you’ll have good results. All the best.

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
4 December 2015 at 8:05 am #5223
SueHealth
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- Novice
@suehealth
Hi everyone,
Thanks very much for the replies to my post last night.
I had a headache for one night, that’s the only side effect I’ve noticed. My VL a year ago was 68000, it’s been going down for the last few years. I had tests a few weeks ago, VL was requested and it showed positive but no level. I am not sure why! My fibro scan showed no fibrosis but for the last 2 years I’ve been exhausted, all the energy drains out of me in the afternoon and I have to lie down for 3 hours.
My ALT is 22 and my AST is 28, they were both less last year.
I am hoping that I get my energy back with this treatment. I feel better hearing that a couple of other people have more energy after waiting more than 17 days.
Thanks, SueHealth.
5 December 2015 at 7:46 am #5271
Dr James
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@fixhepc
Hi Sue,

Make sure you have an AFP (checking for HCC) and/or an U/S

Also remember that just because you have HCV you are not immune from other things, so in the event you have ongoing symptoms, we should dig deeper.

Fatigue is a noted side effect of the medications, and some people don’t start to feel significantly better until a month into treatment.

YMMV
7 December 2015 at 10:28 am #5378
SueHealth
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- Novice
@suehealth
Hi James Freeman,

Thanks for responding to my post.
I am not sure what an AFP is or a U/S!
It is true that I could have something else that is making me so tired in the afternoon, but because my liver is sore and inflamed I still think the Hepc is the cause.

SueHealth
7 December 2015 at 11:23 am #5381
zhuk
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@zhuk
Hi Sue

The AFP test Dr James mentions stands for alpha-fetoprotein, which show tumour markers used to diagnose primary liver cancer; U/S is ultrasound…I’ve had a biopsy but not the AFP.

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
7 December 2015 at 12:06 pm #5384
Gaj
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- Guardian Angel
@gaj
Hi Sue,

zhuk explains the two options suggested by Dr James.

Worth discussing with your doctor/specialist. While your fibrosis is low you’ve had hep for 40 years which slightly increases any risks. So if you haven’t had either then may be worth doing as early detection of various problems is best and both options are non-invasive.

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
7 December 2015 at 12:40 pm #5391
CJ
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- Guardian Angel
@cj
Your ALT & AST are low though, so that’s good.

I was always tired when I had the virus.

Best to take Dr James’s advise,
see your doc & get the blood test for the AFP & an Ultra Sound.

Also there’s two types of VL ( viral load) one just says if detected or not, the other gives the number , so ask for that one.
I think it’s the quantative one.
x

J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results….pending….
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
8 December 2015 at 1:31 pm #5523
emilio
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- Guardian Angel
@emilio
Hi everyone

Thanks for this I found my group lol. Welcome Sue excuse my manners, I don’t seem to get in and around the whole forum these days, so W E L C O M E. Go geno 1s woop woop, the new easy, bout time we got some better news lol Em
9 December 2015 at 1:53 pm #5670
SueHealth
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- Novice
@suehealth
Hi Zhuk, Thanks for explaining the abbreviations, I,m not sure whether I,ve had an AFP.I have had a biopsy a few years ago
and I have had an MRI when I was first diagnosed 13 years ago. I had to have the MRI because I have lumps on my liver and I
have an ultrasound every year to make sure the lumps don,t change.

SueHealth
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