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TOPIC: Side effects.

Side effects. 3 months 3 days ago #24501

  • 2bornot2b
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Hi Dr. J,

I did as you suggested and had 2 days on the reduced dose and 2 on the full dose. Day one of reduced I felt much better than I have in ages. Day two however my tummy kicked off again. I have taken the full dose for 2 days and have tummy pains, feeling shivery and don't seem to be able to stay asleep for more than an hour at most.

This does not surprise me though as I have never responded well to medication in the past. It's extremely rare for me to take a painkiller as they upset my stomach so much, and antibiotics make me feel really ill, in fact I have vowed never to take them unless it's a life threatening situation, which is why I rely on herbal medication from my doctor/acupuncturist so much. I was really hoping that this would not be the case with the Sof/dac but it is what it is, and I'll gladly persevere with whatever it throws at me to get rid of my hep c. My feeling is to cut the dose to 45g for a few days to see how I get on - do you agree?

For anyone reading this who hasn't started the treatment yet, please don't be alarmed as I'm really sensitive to chemicals in any shape or form. I can't be in the same room as a plug in air freshener and if I even get the smallest whiff of chlorine from a swimming pool it has a horrible effect on me. So I don't think that I'm the norm in this respect, in fact if there was a graph I would be on the most sensitive side as opposed to the least, and these meds don't affect everyone in the same way as we are all different.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
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Side effects. 3 months 19 hours ago #24514

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Hi. I hope things have settled a little for you and that a reduced dose it easing the symptoms a bit. It looks as if your sensitivity to things is going to give you a rougher time than most as one of the good things about the new range of medications is the usually minimal side effects.

It sounds as if you are remaining positive despite the additional hurdles. I hope you're able to take it easy for the next few weeks.
You're already closer to being cured. #flower #flower
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 UND Hooray...
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Side effects. 3 months 18 hours ago #24515

Hello 2b,

Any update?
YMMV
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Side effects. 3 months 6 hours ago #24517

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Hello Dr J,

I've been taking 45mg of the Dac for a couple of days and am feeling better thanks. I'm able to sleep for longer periods so my energy levels are up, my tummy aches come and go and they are bearable. A couple of people I haven't seen in a while told me that I look a lot brighter and better than I have in ages which is great. So I'll keep on the 45mg dose if you think that's ok.

I'm having my 8 week blood test at the end of the week so I will upload my results when I get them.

Thanks for all your concern and help.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
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Side effects. 3 months 6 hours ago #24518

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Hi Coral,

As you can see from my message to Dr. Freeman the reduced dose seems to working better for me. I'm sure the tummy upsets will stop once I stop taking the meds. I'm keeping everything crossed that I'll be UND at my 8 week blood test which I'm having in a couple of days.

How are you? Have you finished your last lot of medication yet?
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
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Side effects. 2 months 4 weeks ago #24522

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Hi 2b - That's great that things seem to be settling down with the reduced dose.

I took the last tablet of my second lot of treatment on 17 February. Just this morning Dr F rang with my 12 weeks SVR results and it's still gone baby gone which is great news although I could tell that it was ok because i know what the alternative feels like. The next important milestone is 24 weeks SVR when I can confidently say that I am cured.

This will be you before you know it and I look forward to reading your post when that happens. #flower #flower
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 UND Hooray...
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Side effects. 2 months 4 weeks ago #24523

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I meant to mention 2b that when you get a chance it can be really helpful to put a few details in your signature block about when you started treatment etc. I fight with the actual mechanics of it because it restricts my words but it is helpful for people who are first starting out to read about people's history and recognise themselves in there.

You just go to Profile then Profile Information. #flower
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 UND Hooray...
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Side effects. 2 months 4 weeks ago #24524

Hello 2b,

While there is no good guidance on this, in mg/kg terms you are getting the same dose as somebody of about 70kg. We don't consider dose increases for 80, 90, 100, 100 kg patients so if things seem better on this slightly reduced dose I think it should not impact treatment success.

As an experiment, if you take the full tablet for a day or two and the problems recur that would be compelling evidence we are giving you just a little too much.
YMMV
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Side effects. 2 months 4 weeks ago #24536

  • 2bornot2b
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Hello Dr. J,

Thanks, ok I'll take the full dose for again for a day or two this weekend when I have less to do, and keep you updated of course.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
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Side effects. 2 months 4 weeks ago #24537

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Sure thing, I wondered how you do that. I'll come back to it tomorrow as I'm on my way to bed now.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
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Side effects. 2 months 4 weeks ago #24538

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Hi Coral,

That's wonderful news! Please let me know when you're 24 weeks free. What a relief for you with the latest blood test results. How much better do you feel in yourself now that you're cured? Have your energy levels improved greatly and has the brain fog disappeared?
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
The administrator has disabled public write access.
The following user(s) said Thank You: James-Freeman-facebook

Side effects. 2 months 4 weeks ago #24567

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Hi Coral,

I've just tried to fill the information in my profile. I clicked on profile but couldn't find profile information, so tried to type anyway but it wouldn't let me.

I must admit I find this site very difficult to navigate and am not having much luck with it. What doesn't help is that I don't have time to log on until late at night, but even when I do try during the day I find it frustrating, in fact it does my head in!

For example I've just realised that you suggested I do this and not Dr. Freeman. Also I don't always get notifications in my inbox that I have a reply, so now I remember to log in each day. But every time I try to upload information it seems to be beyond me.

I'll contact admin to find out how to do this when I get chance. As much as I really want to help and provide as much feedback as possible I'm really struggling at the moment, not feeling well again and lots of stressful things going on in my life, so please understand if I'm slow in responding.

Thanks again for all your support,

Carol
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
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Side effects. 2 months 4 weeks ago #24568

  • Gaj
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Here ya go!

fixhepc.com/forum/technical-support/977-...to-your-profile.html


The two main views of the forum can be found in the tabs at the top. There is "Index" which shows by category and "Recent Topics" which is by date.

Email notifications to threads you subscribe to should be sent to you. You subscribe when you start or post in a thread. There is a blue 'subscribe/unsubscribe' toggle button at the top and bottom of each thread that you can use to change your status for that thread.
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
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND!!! :cheer: :silly: :woohoo:
Last Edit: 2 months 4 weeks ago by Gaj.
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Side effects. 2 months 3 weeks ago #24582

  • 2bornot2b
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Thanks Gaj,

I'll give it my best shot. First I'll take a photo on my phone of your instructions as it sounds complicated. Then I'll have to study the glossary as to be honest I don't understand a lot of what is written underneath people's profiles although I get the gist. It's all a bit daunting, and I have to be in the right frame of mind and have the time to give it a go, but the thought of it is getting me down as I've got so many other things demanding my attention and I'm so very very tired with the meds, so please bear with me.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
The administrator has disabled public write access.

Side effects. 2 months 3 weeks ago #24583

  • 2bornot2b
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Hi again Gaj,

I've just had a go and got as far as giving my password on my profile but it just kept refreshing the same page and asking me for my password again. I did this 3 times and got no further. I don't seem to have much luck with this site and it's causing me stress. As much as I want to give feedback as I'm so grateful to be on this trial, I dread having to fill in any information as I always end up feeling really pissed off and defeatist, which isn't like me at all. Sorry to moan, I don't mean to sound so negative, but I don't understand how other people manage to do all these things when I find it all so hard, even when I follow the instructions. It must be because I'm so very very tired, even though I've reduced my dose I haven't had a full night's sleep for the past 9 weeks. Thanks for trying to help me but right now I'm fit for nothing and I hope you understand.
2b diagnosed about 10 years ago
Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
Started dac/sof 27/03/17
4 week test - liver function normal - alt 31
full blood count normal
RNA detected 26 IU/ml Log = 1.42
9 week test 26/05/17
bloods and liver function normal - alt 27
RNA detected <10 IU/ml
The administrator has disabled public write access.
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