Home › Forums › Main Forum › Patient Stories › DAA Side Effects › Side effects for sofosbuvir/Daclatasvir combo.
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7 October 2015 at 9:57 pm #1989
yes total discrimination! If I was HCV virus I would be seriously pissed off !
On some level this is one of the “nicest” diseases you can have…. from a certain point of view:
Firstly we hardly have any symptoms for the first 30 years of the infection as compared to for example with Ebola or even a simple flu viruses,
We don’t cough, sneeze, we don’t have open oozing smelly sores, we don’t fall over, need crutches or are wheelchair bound, etc. it’s very difficult to get someone else infected except via direct blood,
The virus is “well secure” inside our blood cells.So what the fuss? why the discrimination? I really don’t get it,
Why is one virus worse then the next virus??I think the people sneezing & coughing in public spaces like supermarkets without using the hankie pose much greater danger to general public then us, yet a flu virus don’t have such a bad reputation, yet every year flu viruses kill many thousands of people globally, much more then the HCV does.
Virus is a virus, it’s a living entity, it’s want to eat, rest & procreate just as any other species do….including humans.
We have hundreds of different viruses & bacterias living inside our gut in perfect symbioses, so why discriminate against this bugger?“junkie disease” common?, I don’t have a clue when & how I got infected, many people don’t,
It’s irrational! but then many people are, in my experience, including well educated docs.
I think that irrationality & prejudice needs to be cured! but sadly there is no medicine for that.
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.8 October 2015 at 5:52 am #1999emilio wrote:Yep well no blood transfusions here, mis-spent youth banging up and sharing up Afghanistan and Burmas finest. We had no idea, hep c wasn’t even invented lol and nor was needle exchange. Huge regrets now as a grandfather, father and responsible world citizen. Em
I’d rather have a dad or a grandpa like you with a few worldly experiences to share than some straighty 180
We’ve all done things in our youth that are a bit risky – some don’t even live to tell the taleAs Sid Vicious said (or maybe Cranky Franky before him)
Regrets, I’ve had a few, but then again, too few to mentionPeople will always find something to be prejudiced about
I think that is just human nature (or society)
52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected2004 biopsy F3
Fibroscan appt Jan 11 2016.8 October 2015 at 6:48 am #2002Hello!
I’m at three weeks into my medicine (S&D from China).
Like Bloot 10 years ago I had Interferon & Rib and it was vile.
Anyway, talking to Dr Freeman was first time in a decade I felt hope and a long standing depression lifted. So my mood lift wasn’t a symptom of the drugs, it was organic to me and that I actually believed Dr Freeman about the realness and closeness of of a cure.
I’ve had no pain or sickness except once when I had a lot of coffees and smokes and sat up very late. I had horrible aching all over
My mind is a bit vague, and forgetful, also a bit deaf or hard to understand peoples voices.
My pooh was soft in a way that I didn’t like for a few years and 3 or 4 days into meds it got firm and felt normal again.
No lift in energy as people report or smell stuff. But I am restless and not sleeping as many hours.My mood flattened out again too as I started to fret I won’t get well. And at same time a bit confronted with what to do with myself if I do get well, start living again and all that stuff.
I suspect I am fairly symptom free as I had a low viral load when Dr Freeman tested me before these meds.
Very interesting to read in this string about taking the meds away from fatty/carby food. Am glad I got that info!
I will go for blood tests in a week or so to see how I’ve gone.
And I too wish everyone the very best results!
Diagnosed in the early 90’s, geno 3, had Interferon 2006, currently on Sofosbuvir & Daclatasvir
NO VIRUS @ 4 WEEKS of Sofosbuvir & C Daclatasvir
Still free – SVR4 and at 8 weeks too
Still free at 7 months, CURED!!
8 October 2015 at 7:07 am #2004Thanks Boot and Welcome Wombat.
Many of us will never forget the IFN/Riba treatment, soul destroying stuff and to no avail. I’m on the same gear as you wombat but only 3 days in. Fingers crossed hey. Are you in oz? Em
8 October 2015 at 7:26 am #2005emilio wrote:Thanks Boot and Welcome Wombat.
Many of us will never forget the IFN/Riba treatment, soul destroying stuff and to no avail. I’m on the same gear as you wombat but only 3 days in. Fingers crossed hey. Are you in oz? Em
Thank you Emilio!
I am so glad you’ve accessed it too!
Yes, I remember with the Interferon, I joined an on-line group I think via my old Dr’s in Sydney– ACON or some guys like that ran it. Some of those people on that on-line group had done interferon riba up to three times… They were great people and a huge support to me as I was in wilderness in Tas while I was on it and really had trouble with it, lol.
I am still in Tasmania. I think I read somewhere you’re in North Qld?
Actually my neighbor in Sydney did a year of Interferon & riba AND a year of full time uni together, some people are just so amazingly strong.
Still stunned how symptom free this is,
Diagnosed in the early 90’s, geno 3, had Interferon 2006, currently on Sofosbuvir & Daclatasvir
NO VIRUS @ 4 WEEKS of Sofosbuvir & C Daclatasvir
Still free – SVR4 and at 8 weeks too
Still free at 7 months, CURED!!
8 October 2015 at 2:48 pm #2038LondonGirl wrote:I believe there are many in the medical profession who believe they need to be ‘cruel to be kind’ thinking that we may ‘learn our lesson’ if they are cruel to us. It is shocking. Some maybe think we will not ‘endanger’ ourselves again if they make our experience as difficult as possible. Some think it’s our own fault and we are wasting medical resources. Seems to me, many of us are over 50, this has been my experience since diagnosis, they would prefer to have us labelled junkies out of a ‘life-style choice’ I think. It keeps public opinion on the side of no funds for treatment. They also seem to overstate the cost of treatments in the press. Well, English Health Authority do anyway. It’s handy for them to blame NICE.
Johnboy – The blood test thing is interesting ….sorry you had to experience that.
I believe HepC patients all over, are discriminated against.
My personal experience of the medical profession in England regarding this illness has been, in a word, bad.
LGIt’s one of the first questions they always ask. I always tell them it’s probably from sharing a toothbrush/razor with my brother, who’s been registered as a heroin addict since he was 21, and who had a hepC-related liver transplant last year. Their attitude always noticably improves. But my interactions with the NHS on this have still been mostly sh1t, my GP practice notwithstanding.
17 October 2015 at 9:29 pm #2393I’m having these huge brainfogs…hopefully it will get better!! Goodluck to you Johnboy!
17 October 2015 at 9:30 pm #239417 October 2015 at 9:55 pm #2400Hello Johnboy!
How are you now…I’m having deep deep brain fogs…you’re better?
17 October 2015 at 11:57 pm #2402Insomnia 3 days in but hey that won’t kill me.
Gen 3a Started Sof Dac 16/10/15
V/L 20 Mill +
Hep C pos approx. 27 yrsNon responder 2011 BMS (dac) Peg Rib
18 October 2015 at 2:26 am #2408A few people mentioned joint pain as HepC related issue. I also suffer from it. During the treatment it has worsened and I’m wondering if that’s because I’ve stoped taking fish oil and other supplements. Is it safe to take fish oil during treatment? I hope it would not interfere with the absorption of the meds.
Virus not detected from 14.10.2015
18 October 2015 at 2:58 am #2410Hi Life
Your brain fog will improve and once you are saturated with the meds your body/brain should adjust somewhat. God speed L, talk soon. Em
18 October 2015 at 3:22 am #2412Nadia wrote:A few people mentioned joint pain as HepC related issue. I also suffer from it. During the treatment it has worsened and I’m wondering if that’s because I’ve stoped taking fish oil and other supplements. Is it safe to take fish oil during treatment? I hope it would not interfere with the absorption of the meds.
My joint pain was also worse periodically in the first few weeks of treatment. It’s eased again recently, and some days it’s better than it has been for the last few months.
Take the fish oil at the opposite end of the day to your meds.
18 October 2015 at 3:36 am #2413I’ve had plenty of soreness and some strange brain farts .
Other times I am spot on…. Better than ever.
Once I get through this I will be a new person. I am convinced of that.
G1 58yo F1 54,000 viral load Relapser 2003/4 Sof/Dac started 21/9/2015
18 October 2015 at 4:37 am #2414 -
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