Forum Replies Created
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Hi Cindi,
Thanks for the update on J, the time has flown! Sixteen and hep free is great news.
Tho’ I have vague memories of being that age once so not holding my breath over him feeling more like doing his homework.
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 Oldie,
You may find these threads of interest:
http://fixhepc.com/forum/experts-corner/443-hcv-related-nervous-system-disorders.html#4999
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
PauliNO wrote:I will however have to bend a few rules
Pfft! I’ve driven large trucks over some of those in my lifetime.
I don’t necessarily advocate it for others but for me, if it doesn’t go outside of my personal ethics, risk hurting others or set a bad example to minors then rules are merely boundaries set by someone else so I weight up why they did that, the consequences versus the outcome and make a decision as to my course of action. YMMV
Once you are in a position to be confident of your own treatment it would be great to hear what the situation is with regard to the legalities of entry of prescription meds into your country……..also any suggestions you may have for others who wish to follow if you are comfortable with that bit.
Hoping for a speedy commencement and successful treatment for you.
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 Dan,
Sorry, my post wasn’t criticism of you, just a general comment on how we sometimes seem to get caught up in the testing and results around here.
And I hear you on accepting free tests when they are offered. I went to my GP to request vitamin D & B12 testing and he suggested full bloods and LFTs as well. My response was that I didn’t really see the need because I could feel the improvements but he said that he wanted to see the results so I wasn’t going to argue with that!
Yes as you say, I also suffer from “What If?”
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
YAYY!! For Magpie too!
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 Sir, I agree with your comments.
I suspect that as a group we are placing too much emphasis on VL results and doing the tests too often.
Probably testing at week 4 to confirm a large drop from commencement of Tx is sufficient to ensure the meds are working and give us confidence with another test at 8/12 or 12/24 depending on length of Tx to confirm we haven’t developed resistant viruses which would show as a very significant rebound.(Note that I am not even suggesting we need to be UND at those points based on the research)
In my case I was concerned when the lab only gave me a detected result at 4 weeks so it was a relief to come in as <15 on retest. My next test will be at 12 weeks (I'm on 24 week Tx) but even if I had tested a couple of hundred at 4 weeks I like to think I would have been prepared to wait till 12 weeks for the next result as all the research says that we are only looking for a significant drop to confirm the meds are working.
So what is a significant drop? Basically anything where we go from hundreds of thousands or millions down to a couple of hundred or less would qualify. A significant rebound would be the same in the opposite direction.
The above is my understanding of the science which I like on a rational level but I also have an emotional side so can understand the need to have it confirmed that we as a person are doing really well. But as you say it isn't a competition or race to get there first, we just need to reach the finish line together, at low levels of detection.
Edit: For most of us the second test for resistance is not really a requirement but in my case with prior exposure to Dac it will give me a warm and fuzzy feeling when I pass it.
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
Another point to consider which I’ve mentioned elsewhere is that I suspect part of the push for 8 week treatment is a desire to save on medication costs for large treatment groups. To use Mike’s figures and in very simplified terms:
100 patients X 12wks = 1200wks treatment costs with 2 patients requiring retreatment @ 24wks = 1248wks total cost
100 patients X 8weeks = 800wks treatment costs with 6 patients requiring retreatment @ 24wks = 944wks total cost.
Now, call me a cynic if you like but which looks more appealing to a government or insurance company?
But for self funders like ourselves there is no opportunity to spread the costs if we happen to fail treatment so as others have pointed out, for a few hundred bucks more we can do the full 12 weeks.
Of course there are possibly other reasons to opt for shorter treatments like easier medication compliance, less monitoring?, and potentially less side effects.
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 Magpie & Anna,
This thread started about ketogenic diet which is a form of Atken or high fat/low carb diet as possibly being beneficial for those with HCV. It then got sidetracked to vitamins which I was responding to, so my bad.
I take the view that a good, balanced diet consists of basically the recommended five food groups pyramid but with emphasis toward veggies and fruit and maybe a bit less carbs than often suggested. So meat, white and red, fish, seafood, nuts, dairy, eggs, whole grain carbs, fruit, veggies, etc. not necessarily in that order and a bit of each in moderation. I like fresh and I’m not a big fan of concentrated smoothie or protein drinks etc. please note I’m no nutritionist, it’s just what seems to work for me.
…….ohhh! and since starting treatment pizza! 
Edit: my diet was more restricted pretreatment when I found I had problems digesting fats and large serves of protein or anything spicy, much of that has now resolved. I also eat very little processed sugars or added salt.
For supplements there is evidence that vitamin D and B12 were important for success under the old interferon treatments although little research has been done on these new DAAs they are probably beneficial which is why I got mine checked. See below link for all things supplements.
http://fixhepc.com/forum/supplements.html
It is also important to be aware of potential drug and food/spice interactions with these DAAs. Don’t over worry it as most things are fine but it pays to check any prescription or over the counter drugs, strong herbs and spices and things like grapefruit and pawpaw. The latter two are no go with Daclatasvir but okay if you are on Ledipasvir. See below for interaction info:
http://fixhepc.com/forum/drug-interactions.html
Any questions that you can’t find answers for, ask away and someone should be able to help.
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
A.L. wrote:(apart from Tyler and Marla)
And you are the narrator?
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 Magpie,
I did, but on this occasion it arrived about 10 mins after the meds.
Either public holiday or clunky Internet connection?
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
Just came back from getting my test results with B12 at 582 pmol/L so that looks reasonable given I only started supplementing at low levels about three weeks ago so will boost that a little till end of Tx at least.
OTOH vitamin D was only 32 nmol/L (13 ng/mL) so far too low despite what should be an adequate diet and sunlight.
My GP has recommended a high initial daily supplement to get me back in range then tapering off over time.Also got LFT some of which can be seen in my sig. At the very top of the normal range so not as good as some on here but the overall summary for all results has changed from “consistent with active” to “consistent with mild” hepatocellular damage. Can’t complain too much considering the lump of old boot leather I started the Tx with.
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
2b wrote:good for you MtGoat, you don’t need doctor’s permission to take medicine that we all know works. as you saw, you lead, and the doctor followed, ordering up all the tests for you.
Yep!
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
Weeeelllll, while I don’t usually agree with A.L., he does give me pause to review my position to ensure that it conforms to my ethical standards. I believe it is useful to have someone to provide those sort of checks and balances to any passionately involved group of people*.
* maybe an idea for the Gilead management team to consider, too.
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 YAYYY!!! My second twelve weeks of treatment just showed up at the front door.
Huge thanks to Dr James and all the rest of the team at FixHepC and the Buyers Club who make this all possible.
Gaj
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 Chejai and Ariel,
I felt very much the same as you and commented on here at about 2 weeks that I just didn’t feel I could cope with company one weekend and hid away. At ten weeks now, those feelings and sides have greatly reduced and I find myself much more outgoing and social….but still with occasional lapses.
Just this last weekend I spent the time with two old friends I hadn’t seen much of for 25 years (Ariel; at the traditional annual foreshore camping spot just across from Gunna…..I thought you were in southern NSW until you mentioned that) We hung around the beach and campsite and saw a couple of cool musos in a little bar on Sat night and it was just so nice to relax and reconnect with such dear friends. But even though we didn’t do a lot, by late Sunday arvo I was shattered and just needed to get home to my space and hibernate.
Then yesterday I was good to go again so down the local park to celebrate Australia Day with the Black Sorrows and Darren Middleton with a nice dinner in between with other friends. I am really starting to enjoy this getting out and seeing people and events that I have found too exhausting for the past few years. Having a life is so much fun! So you will probably have ups and downs through treatment and it gets physically and, possibly even more so, emotionally tiring at times but hang in there ‘cos it does get better and easier and much more rewarding as you go.
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
