Forum Replies Created
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Billy,
You can see from this thread a lot of variance in symptoms/sides both pre and during treatment. Your last post reminded me about ‘
LondonGirl’s post on the first page. I also get the phone effect sometimes.
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
Hi Enkel,
I was just looking for a thread that I thought fitted what Billy was describing and surprise! It was yours.
http://fixhepc.com/forum/questions-and-answers/206-can-hep-c-cause-strange-symptoms-yes.html
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
Sounds good as long as we can maintain it? I suspect there may be a bit of work* in that and probably needs something like the Zeemaps Paul linked at the start which also starts to cost for larger databases and more capabilities.
Hopefully something can be done with Google or similar, or there are apps like this but they only track visits by members and visitors.
* Happy to contribute to the maintenance but no setup skills.
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
QHi Chejai,
Excellent news! So glad you’ve taken the first step to a new life.
Open the app and click on the small Full Site button down the bottom. Then click on the Learn button. From there click the Questions & Answers and the How To buttons. Looks like the most important bit is to log into the virtual waiting room before your appointment time then I suspect the Doc can talk you through the rest when he arrives. Also have a look around the rest of the Full Site bit as there appears to be plenty of info there. Sorry can’t be more specific, I just looked at it for just the first time myself and feeling foggy this evening.
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
Hi Billy,
I’m sure that the effects you are feeling with go once you complete treatment. We all seem to be effected a little differently by the meds, some breeze through, others struggle as you will see when you look around here. Join in and ask questions, there’s lots of good information and understanding of what we are all going through together. After all we are sort of pioneers. We have a few good laughs too which is important. BTW are you supported/monitored by a clinic? Or going it alone?
Yeah, insomnia definitely won’t be helping and will only increase the symptoms you have. Are you taking anything for it?
If not have a talk with your clinic or GP about some mild tablets that won’t interact with the sof/dac. It can make a world of difference getting a reasonable nights sleep.
So far this time I have been sleeping okay, well six hours anyway, so haven’t needed anything but last treatment attempt I was a wreck until I spoke to the clinic about quitting and they gave me a script. I don’t normally like taking those sort of meds so only took a half tablet when I couldn’t get to sleep. But I always had a half sitting on the bedside table with water so if I woke during the night and couldn’t get back I would just have that. Having half tablets of the mildest version of Temazepam available was just enough to make me drowsy and sleep for at least a few hours usually. But only when I really needed them (probably 3 or 4 nights a week) which was enough to get me through the last 4 months with some sanity left.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
Not under her profile.
And BTW, figured they are not blocking by machine/IP addresses. Just email address and cookies. So new email address and clear cookies, reboot and “Hello new member”.
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
And file the white car man with the gun fixation as henchman and Gilead shareholder based on response to “new fibrosis drug thread”
yup!I am watching…….but of course I have a vested interest…..more ways than one!
smilin~ s t i l l !
g
Lower case g is him not me
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
Welcome Billy,
I’m not a doc so take my comments with a grain of salt, but my understanding is that the heart issues have mostly related to Sofosbuvir where patients with cardiac issues were already using amiodarone. The symptoms are a very slowed heart rate and the incidence seems to occur within about a week of commencing treatment so it doesn’t appear to be related to our own experiences. As you will have read from my post I experienced what I thought were cardiac issues and ended up in hospital with the same results as you in that they didn’t find anything. However that occurred in Feb and so well before I commenced treatment.
From what I’ve seen it does seem that these DAAs have more side effects in those of us with greater liver damage (noting you are F3/4) and we need to keep in mind that while hep c primarily impacts the liver, in those of us who have had it for a long time it does effect the rest of our body in various ways too. And although the meds knock out the virus quickly and that is seen in liver function recovery, it is going to take a while to heal other damage and some things may never fully repair. But at least with the virus gone and our livers working much better we can finally start that process.
And hey, I know a lot of people in their mid fifties without hep who couldn’t hope to paddle a board let alone stand and then lie down on it! :~}But very wise advice for everyone to check any sides that really worry them with the experts and test for anything you are concerned about.
While these sides can be hard to handle they are nowhere near the old Peg/Riba for me but of course everybody seems to differ. But in my case my GP is happy so far, my basic bloods are good and I’m due at the clinic for a check on Thursday. Unfortunately my 4 week viral load results probably won’t be available till after Xmas (but hopefully before NY) but given the great results everyone else is getting around here I’m not too fussed and figure that worst case I will be undetected at 8 weeks anyway! I’ll definitely be trying for the full 24 weeks to really beat this and as my specialist said, worst case I can drop the riba and keep the sof/dac going.If the riba question was to me, then the shipment was delayed and as the specialist said to try and take it for as long as possible but try for minimum 12 weeks, I decided to start the Sof/Dac asap and add the ribavarin when it arrived rather than wait. Impatient ol’ bastard that I am.
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
Hi Tricia,
Not sure if I’m the best to advise given my double post just now but yes private chat should be private. Use the tab above here rather than the lower pop up to make sure you are in private. Or PM – at the top in small letters on the right.
Chester,
I was the same with making personal, Vororo’s message looks good ( and I’ve got a few IPs in my back pocket)
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
Vororo wrote:But since the sentries to heaven are now well-armed and on the look-out, does anyone want to try going in command-style and try to get a PM to those poor souls stuck behind enemy lines?
Ninja mask already washed, ironed and donned.
It’s fun taking the piss with the mods but a bit futile in the big scheme so subtlety or subterfuge from now on. (I do retain the right to flame if I get bored)
Chester,
I picked up Dawin earlier, thanks for getting Ellen.
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
Vororo wrote:But since the sentries to heaven are now well-armed and on the look-out, does anyone want to try going in command-style and try to get a PM to those poor souls stuck behind enemy lines?
Ninja mask already washed, ironed and donned.
It’s fun taking the piss with the mods but a bit futile in the big scheme so some subtlety or subterfuge for the future. (I do retain the right if I get bored)
Chester,
I picked up Dawin earlier, thanks for getting Ellen.
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
Gunna spend today rereading Sun Tsu.
Edit: Okay….that don’t sound good, war can wait.
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
Hi 2b,
Okay, I’m back in and pm’d.
You missed the fun.
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
Hey, just realised we are front and centre on the real HepatitisCentral site courtesy of the SMH article. How did I miss that previously?
http://www.hepatitiscentral.com/news/
Well, truth be known we’re second banana now but still not bad!
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
I felt I played by the rules; no links, didn’t solicit (very much), politely answered other posters and spoke to my own experiences and journey. Okay so I did ask a couple of pointed questions but just to clarify my understanding of the other poster errrm moderator’s position. Don’t expect the Fixhepc thread to return but it will be interesting to see about the G2 one.
Thanks for grabbing those, be handy if I get to ask/re ask questions.
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
