- This topic has 518 replies, 47 voices, and was last updated 6 years, 10 months ago by
.
-
Chejai wrote:
I’ve decided I want to do the 16 weeks, maybe longer, now it’s on PBS. I want to be rid of it and no return visit like an unwanted house guest
I’m still very fatigued, struggle to get things done and have bad dizzy spells when bending/crouching down.
But the scariest thing is this burning, numbness on the left side of my face, my cheekbone swells right up, my left eye becomes really blurry, hurts to blink, pain all-around eye socket, becomes bloodshot and half-closed by night. I start out ok but as the day progresses so do the symptoms. You get migraines, like me and I get the aura, it’s like the prodrome phase (the days leading up to an attack) and the days after, the pain and tenderness and lurking headache, light sensitivity etc BUT add to that burning tingling pain that starts at temple/cheekbone, and travels down side of face, around left eye and even down the left side of my tongue!! As well as really swollen cheekbone and can’t wear glasses properly, have to sit them sideways
I am so sorry for how you are feeling Chejai!
The hep C problem is in good hands and you are a fast responder, UND at 4 weeks!
So hang in there, all will be fine. You will sort out all the problems, one at a time!I wish you all the best and only UND!
Ariel wrote:I cleared to UND early like you too, but as tx nears its end I am having that little voice saying ‘should you extend…”
I hope you get through your move okay. I helped move my elder daughter last week and had the younger in and out of hospital it can all seem overload sometimes cant it. At the end of it all I visualise you plonked in new digs surrounded by boxes and stuff. Time for a takeout meal lo!
Yay! EOT is approaching!
Don’t worry you are a fast responder too, almost 5 weeks UND! And you had little liver fibrosis F1-F2!
Happy EOT and only UND!
I wish you and your daughters all the best!
Edit: Oops ! Sorry, my mistake with fibrosis!
Your signature is clear, F0-F1!
Chejai wrote:Hi Ariel,
Originally Dr James prescribed 16 weeks of Sof/Dac because Genotype 3 is a bit tougher to beat and research so far indicated 12w tx-96% ( hope I’m remembering this correctly) success rate; 16w better; then 24w if I wanted 99.9% (I don’t think there’s ever a 100% guarantee?)
It is always that last few% that are the tough persistent mutants, who may appear to be lying low while the war is on but when the DAA Army recedes they can multiply very quickly.
So, if I felt any sides I’m experiencing ok then I give it my BEST SHOT doing the longer course. Since most of my bad symptoms seem related to pre-existing conditions, I don’t really think – but won’t KNOW – how much of what I’m experiencing is a DAA side effect until after EOT.
I’ve decided I want to do the 16 weeks, maybe longer, now it’s on PBS. I want to be rid of it and no return visit like an unwanted house guest
I’m still very fatigued, struggle to get things done and have bad dizzy spells when bending/crouching down.
But the scariest thing is this burning, numbness on the left side of my face, my cheekbone swells right up, my left eye becomes really blurry, hurts to blink, pain all-around eye socket, becomes bloodshot and half-closed by night. I start out ok but as the day progresses so do the symptoms. You get migraines, like me and I get the aura, it’s like the prodrome phase (the days leading up to an attack) and the days after, the pain and tenderness and lurking headache, light sensitivity etc BUT add to that burning tingling pain that starts at temple/cheekbone, and travels down side of face, around left eye and even down the left side of my tongue!! As well as really swollen cheekbone and can’t wear glasses properly, have to sit them sideways Anyway, I’m glad you are doing well and happy your daughter is safe. Start moving today so I’m off to sign contract etc.
Happy days My Dear Friend
I’m very sorry to hear you are having such a rough time, Chejai
It sounds hard enough to endure without going through treatment as wellIt does sound a lot like your pre-existing conditions, definitely. It must be difficult especially since you were feeling relatively good at the start of tx….hang in there seems like a platitude but I really mean it mate! So being Gen 3 inclines you towards extending the course? Since you were UND like me at 4 weeks, just wondering. I know that I will not be extending or retreating, in any case no matter what. Re the PBS though, I don’t think anything has really filtered through as yet – my recent extended hospital experience suggests than no one has heard of these meds, at least so far at the coalface. Maybe its different with a GP, you might want to start making some enquiries now if that’s the way you’re leaning atm.
All the best Chejai – seriously it sounds awful what you are going through. Fingers crossed you will find some relief for it.
isaing4 wrote:Ariel wrote:I cleared to UND early like you too, but as tx nears its end I am having that little voice saying ‘should you extend…”
I hope you get through your move okay. I helped move my elder daughter last week and had the younger in and out of hospital it can all seem overload sometimes cant it. At the end of it all I visualise you plonked in new digs surrounded by boxes and stuff. Time for a takeout meal lo!
Yay! EOT is approaching!
Don’t worry you are a fast responder too, almost 5 weeks UND! And you had little liver fibrosis F1-F2!
Happy EOT and only UND!
I wish you and your daughters all the best!
[/quote]Thank you so much for your kind wishes
I’m doing fine around 19 days to go I think
I had bloods done again yesterday by my GP
YES the previous UND was taken at Day 32Just to say no I have never been F1-2
I’m 5.6 Kpa last time which is F0
I don’t want to be written up as F1-2 never have been.
Highest ever reading was 6.0 which is F0-1
Here are the charts but it is in my signature the correct and most generous F score even allows for my highest reading
ArielNot an F2
never been one or an F1-2.
Not my signature http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html
Hi zhuk & Chejai,
Gt3 often presents as a bit more aggressive and difficult to treat than the other genotypes even if initial RVR is similar. The usual recommendation is to extend the treatment somewhat which seems to bring the success rate up to something similar to the other strains.
I’m also sorry to hear of your issues during treatment Chejai, I don’t think they can just be put down to sides so would advocate getting things like the headaches checked. Some may be pre-existing conditions that won’t resolve with EOT but many could well still be HCV related and just take longer to heal. After all, while these new medications are miraculous it is a lot to expect 35 years of your body fighting the virus to just be cured in 10 or even 24 weeks. Some symtoms may take much longer to go away or fade and so require watchful patience.
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
Ariel,
Looking forward to hearing the results of your latest tests.
Do they include VL or just LFT and others?
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
Thanks Ariel, useful to know there is a local lab with that capability in case I need it for any ‘confidence’ tests after EOT. It is a superb day, but have to drag myself up to Prahran
in an hour for tests myself. It seemed like a good choice of clinic when I worked up that way……still is but the long hike is a nuisance.
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
Ariel wrote:Just to say no I have never been F1-2
I’m 5.6 Kpa last time which is F0
I don’t want to be written up as F1-2 never have been.
Highest ever reading was 6.0 which is F0-1http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html
I apologize for my mistake! I have edited my previous post with that!
I am really very pleased for you, being F0-F1 .
Thank you for the link with fibroscan scoring!I just wanted to say that you are a quick responder, UND at 32 days, and odds are on your side for SVR!
Good luck with your bloods!
I wish you and your daughters all the best!
Weight gain? Noooooooo
Small price to pay
Hi Beaches
Gaining weight has been a good thing for me. I have had a rough trot with peginf tx leaving skinny legacy and this is the first time in four years that I have successfully overcome that issue. I was truly skeletal from that tx and despite effort such as sport, growing my own food, taking ensure plus when urgent, eating no sugar, no true appetite suppressant foods, no alcohol and doing yoga etc focusing on weight gain through solid balanced diet, rebuilding muscle deteroriated completely by peginf I was never truly “hungry”, and had to force myself to eat. It was like an induced anorexic state that I had to mindfully fight off, all part of my peginf ride. During that regime I often vomited more than a dozen times in a day. In hospital they worked hard to fatten me a bit so I could get home again.
So now I am astonished at my appetite it’s returning. Somedays I am absolutely starving no matter how much I eat!!!
illy:' /> I hope it’s a sign of a future full SVR and at present I have external stress in my personal life so that’s going to be a good indication of the appetite trigger of these DAAs
I’m not really up with this as a general sx for all patients but for me it’s a godsend. At clinic they ask if I had any nausea! Hardly, more like pass the food now thanks
We are all different here, and so my happiness over my weight gain is just a personal anecdote, a sign things are working. That’s what is clear about these meds, everyone seems to present with different sx at various times, some have none, but the common thing is that they work and almost everyone is cured. Most people report good progress in many life areas. I think that taking away the anxiety of living with hepC is going to be the best feeling I have had in a long time and I can see the good outcome now. Thanks to this team at FixHepC
Looking back before I got my meds it’s a different place and I don’t want to go back there. We are so blessed to have access to treatment that really works.
Sending love
ArielHi beaches,
I suspect that very few if any pharmacies will carry these in stock given the label pricing. They will likely order in on presentation of a script. You may need to check around your area to see which chemists are prepared to do that. Likewise those who are wanting to fill repeat scripts should probably present them to the pharmacy a few days to a week prior to running out of the previous one to ensure continuity of treatment.
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
- You must be logged in to reply to this topic.