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TOPIC: Daklinza/Sovaldi- side-effects and treatment duration

Daklinza/Sovaldi- side-effects and treatment duration 3 years 2 weeks ago #22790

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Firstly, the public hospital liver clinic I attend only prescribes a 12 week course of treatment. They did not check for viral load at the 4 week mark, even though I brought this up- it was a standard blood test only. "We don't do that here".

Treatment experienced ( Pegasys and Ribivirin), which caused massive physical, cognitive and emotional changes, many of which were only starting to subside, after five years, before commencing the current regime.

The morning after my first dose of the new combo. I felt wonderful! Crystal clear mind, energy and optimism. This left after four days. As the treatment progresses, I am feeling worse. Currently I'm at week nine. I have severe neuropathy to the hands and feet, an itchy face, a flat mood, joint aches and the expected fatigue. It is as though it has triggered the Hepatitis into overdrive!

Is there an option of getting a further 4 weeks of the medication via a GP here in Oz? I am unsure if 12 weeks will do it for me, and I loathe to be back facing another treatment round if unsuccessful.
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Daklinza/Sovaldi- side-effects and treatment duration 3 years 2 weeks ago #22791

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Welcome AK123,

These new DAA treatments don't require the same levels of monitoring as peg/riba did (and are much less debilitating) but there appears to be a fair bit of variability in what is seen as the optimum level by various clinics/doctors. If you click on this link fixhepc.com and scroll down to the section titled "Important information for Australian Hep C sufferers" you will find a couple of videos covering what would make me as a patient comfortable during treatment, along with other information that may be useful to you. It's difficult for me to comment on length of treatment as that needs to be assessed by a doctor based on a number of factors including your fibrosis level which you haven't noted.

Also, assuming ribavirin isn't part of your current treatment then your response to the Sof/Dac seems atypical or at least stronger than what most people report although there can be a bit of an up and down effect for some of us during treatment. Daklinza in particular can react with some drugs and foods which can increase side effects, below are a couple of links explaining some of those which may help if you are taking/eating something listed.

fixhepc.com/forum/drug-interactions/108-...ractions-cyp3a4.html

fixhepc.com/forum/drug-interactions/611-...latasvir-fruits.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
:cheer: :cheer: :cheer:
Last Edit: 3 years 2 weeks ago by Gaj.
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Daklinza/Sovaldi- side-effects and treatment duration 3 years 2 weeks ago #22801

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Thanks for your response- it's reassuring to be able to discuss these issues with people that can relate. I had a read of the recommended information and am not taking any extra medication. Caffeine appeared on the list I note, and this is something I consume.

My last Fibrosis score was 0-1, and liver function tests just a tad above normal (ALT). Viral load just over 1 million.

I once took an anti-depressant and had an immediate result (within 15 minutes!). This never worked as well as that initial dose. It's almost like I have the desired effects in reverse order!

Today I fell asleep sitting up, and was woken by the neuropathy in hands/feet. Perhaps the treatment of old damaged the nerves and is being re-triggered by the current treatment..

Thanks again for your reply and advice!
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Daklinza/Sovaldi- side-effects and treatment duration 3 years 2 weeks ago #22805

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Coffee is a weak 'inhibitor' so unless you are drinking large quantities (or are very light weight) it probably won't have much effect though would be easy to reduce for a couple of days to see what difference it makes.

Something else I should have mentioned is that most of us find that being well hydrated helps reduce any sides so drink plenty of water through the day but if these problems continue to worry you should discuss them with either your clinic or a doctor with experience with HCV.
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
:cheer: :cheer: :cheer:
Last Edit: 3 years 2 weeks ago by Gaj. Reason: Phone spelling 'n grammar
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Daklinza/Sovaldi- side-effects and treatment duration 3 years 2 weeks ago #22815

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I have another question. For non-cirrhotics/low fibrosis status, what is the treatment time-frame that gives optimum SVR? I am aware that the recommended period is 12 weeks, but is this supported by trial data that compares this to longer (16, 24 week) drug regimes?

Also I am curious as to what drugs/duration of treatment are being used to retreat those with Genotype 3 who where previously unsuccessful in achieving SVR on the new medication. It would be great if these details could be noted for general reference.

Apologies for being a pest!
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Daklinza/Sovaldi- side-effects and treatment duration 3 years 1 week ago #22827

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For GT3 there is some evidence that 16 weeks may be better than 12 for patients with low fibrosis. Velpatasvir is more potent than Daclatasvir so may get better results with 12 weeks. On the data it looks quite similar.

Retreatment of GT3 is harder. Sofosbuvir+Zepatier is certainly an option. Using Sofosbuvir+Daclatasvir+Interferon+Riba is another. There are some more experimental options like V-pak+Sofosbuvir being trialled. The key approach is more than 2 drug therapy with NS3/4 + NS5A + NS5B + Non DAA (ie Riba and or Interferon). The basis or retreatment logic is not to repeat the same thing and use stronger, longer and/or Ribavirin - pick 2 or more.

Most people won't have to contemplate it. Costs are typically 3-4x the cost of initial treatment using a mix of generics and originator medication sourced from places where it's cheaper like Eqypt or Russia.
YMMV
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Daklinza/Sovaldi- side-effects and treatment duration 3 years 1 week ago #22866

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I really appreciate the input on this site, and upon research made the decision to extend treatment. I have ordered an extra 4 weeks worth of the Sovaldi/Daklinza which will give me a total duration of 16 weeks.

I have noticed a lessening of the side effects too, including the neuropathy, which is positive! This is at just over the 10 week mark. I feel a bit brighter in general.

I will update at end of treatment. Best wishes to all!
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 11 months ago #23150

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Hello and Merry Christmas to everyone. Thought I'd touch base again at Week 13 of treatment- I get my first blood test results tomorrow. I had a break from side-effects for around two weeks, however I am now experiences the peripheral neuropathy again, although to a lesser intensity than earlier in treatment. I feel tired and a bit flat in mood again.

I have also gained a large amount of weight (11 kg.), since beginning treatment. I have not been anywhere near this weight range (bar during pregnancy). I have eaten a little more than normal, but nothing that should cause such a dramatic change. Obviously I am wondering whether the mechanics of these DAA'S. are contributing to this.

I plan to reassess my treatment duration pending the outcome of the (much awaited) first results. It's tempting to extend beyond the 16 weeks however the liver clinic nurse, after a phone call, all but insinuated there was no data to support this and actually sounded peeved I am considering this.

Feel free to include your own Dak/Sov experiences in this thread- it's nice to have a sense of camaraderie throughout this experience!
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 11 months ago #23172

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My viral load is undetected at week 12, and other bloods/ LFT within normal parameters. Around two weeks until treatment end. Just hoping 16 weeks will kick the scourge- my only concern being the effect I felt of the DAA's in my liver region only seemed to stop around week 10- which is when I assume the virus was eradicated. Ie. How long do traces of the virus remain viable?

Anyhow, due to the holiday break, I need to make a decision fast.
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 11 months ago #23180

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I'm not an expert but as your nurse says, there isn't a huge amount of data on extending GT3 treatment naive with F0/1. I suspect 16 weeks gives you a really good chance of beating this virus and that extending further would be really getting into the area of diminishing returns though it may possibly give you a percent or two if you haven't already cleared.

Your liver 'twinges' are something that have been commented on by others including myself. They seem to occur both during and post treatment and as far as I have seen don't seem to correlate with whether people reach SVR or not. I still experience them sometimes but my specialist can find no reason for them despite lots of checks including various scans, etc. Having said that, do discuss them with your clinic.

Weight? Sigh, I put on 6kg on treatment myself despite significantly increasing my exercise and fitness. I'm not sure whether it was because I had a better appetite or because I was metabolising my food better but it has taken six months to finally get rid of them which I understand is beneficial for anyone with liver complications. (Edit: I do find I can tolerate fats much better these days so don't specifically avoid them as much and that may be something to consider)
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
:cheer: :cheer: :cheer:
Last Edit: 2 years 11 months ago by Gaj.
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 11 months ago #23181

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I have also gained a large amount of weight (11 kg.), since beginning treatment.

I would be worried that is fluid as in ascites. Are your ankles swollen/do your shoes still fit.

If it's not fluid it's fat and you would need to be really pouring the food in to gain 1kg of fat a week.
YMMV
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 11 months ago #23182

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I plan to reassess my treatment duration pending the outcome of the (much awaited) first results.

If I was you I would not be doing that.

While undetected at 4 weeks is a good sign, undetected at 12 weeks is essentially meaningless. Everyone is undetected by this stage. In other words this result informs nothing. Yes, nice to see, but useful or informing treatment duration - no.
YMMV
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 11 months ago #23183

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Thanks for your input, Gaz! I'm actually treatment experienced by the way (pegasys/ribavirin). I do agree that 16 weeks treatment duration appears to have the edge over 12 weeks, and that there is very little difference between 16 and 24 week SVR outcomes...you are correct!
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 11 months ago #23184

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Hello Dr.. Freeman and thank you so very much for the creation of this site, the opportunity it brings, for your dedication and knowledge base.

My weight gain is fat- there is no sign of swelling of the ankles, etc and I have toned down my food portions and added extra walking to my daily lifestyle.

I feel disappointed that I have no previous results to go on bar the 12 week stats.- I knew this would hinder my ability to make more of an educated decision re: treatment length. I agree that going on these current results is fruitless, dang it!

The same thing happened on my interferon/ribavirin treatment- the specialist didn't bother to check at the 3 month mark (as was required) which, once I relapsed afterwards, left me with little data to work out the time frame of my individualized reaction to the meds. So silly!

I will therefore just go with the current plan of 16 weeks.

Once again, thanks so very much for your valued input.
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Daklinza/Sovaldi- side-effects and treatment duration 2 years 10 months ago #23545

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Well, I am nearly one month post treatment and I feel progressively worse. I have what appears to be chronic fatigue, a flat mood/mild depression, unsatisfying sleep (ie waking exhausted) and am aching all over constantly (legs are worst followed by shoulders/arms). I feel as though I have a touch of the old post interferon/ribavirin side-effects re-triggered. Is anyone else experiencing these effects?
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