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TOPIC: Side effects.

Side effects. 4 years 4 months ago #24585

  • Mnem
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Hi 2bornot2b, Once you are logged-on, try clicking on 2bornot2b to take you to your profile page. Click 'edit' then put in your password and IGNORE requests to add it again. You should be able to click the Edit user information tab.
Then click Profile Information tab, and scroll to the end to enter your profile details.
Write what you want there. No need at this point to write in medical terms, you can always change it later

Don't fret if you have no energy for this right now though.
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
Last Edit: 4 years 4 months ago by Mnem. Reason: detail
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Side effects. 4 years 4 months ago #24587

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Thank you Mnem, I'll try again tomorrow, your input is most appreciated.
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. 4 years 4 months ago #24592

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Hi 2bornot2b,

Give it another go but IT admin stuff can be so frustrating, especially with a foggy brain so maybe leave it to one side until you feel a little better. You have HepC and you are being hit with a few more side effects than usual so be kind to yourself.

You asked if I feel better now that the virus is gone. The answer is yes but with some qualification. Physically I have more energy and don't wake up every morning feeling like I have a hangover without actually having had a drink. The brain fog which had caused me so much angst and frustration is gone which helps with decision making and generally moving forward with life. I've also made my health a real focus so I feel really really well. And I can enjoy my beloved champagne again! All good.

Emotionally I've had to deal with a bit of baggage in terms of the cost that the virus has had on my career, relationships and family. I don't dwell on it and I am so thankful that I have been lucky enough to access this new medication at this time but I wouldn't be honest if I didn't say that there is a bit of sadness in all of that. The thing is though that feeling so much better physically helps with dealing with all of the other.

Keep posting - we're here with you.

Coral
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 and SVR 24...
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Side effects. 4 years 4 months ago #24597

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Hi 2bornot2b,

:S Oops........you caught me out! My only excuse is that I too was still brain fogged when I wrote that last year. :lol:

Yes, the sign on page still shows after you have entered your password twice, it is a software bug but you will be able to add and save details to the signature panel in the "Profile Information" tab. (I've also edited my instructions for future members).

I hope that helps. :)
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:
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Side effects. 4 years 4 months ago #24622

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Hello Dr. J,

I took the 60mg dose just once as I kept waking up every few minutes, I was shattered the next day and felt sickly.I'm back on 45mg and it seems to be suiting me much better. I've less than 3 weeks until I've completed my treatment and am starting to feel much stronger and happier. Many thanks again.
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. 4 years 4 months ago #24623

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Hi Gaj,

Yay I did it with you help - thanks. I've put some information on my profile, not sure about the terminology so kept it simple, but it's something at least.

I only came across the message I'm replying to by chance, as yet again I didn't receive a notification in my mail, yet I do get them at other times. I know you mentioned how to fix this in an earlier mail, but I'm still none the wiser - any further clues please?
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: coral

Side effects. 4 years 4 months ago #24624

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Hi Coral,

Well I finally managed to put some information on my profile, thanks for your understanding and encouragement. I'm so glad to hear that you feel so much better and the focus on your health is really paying off. I know where you're coming from regarding the cost of the virus to so many aspects of your life and yes it doesn't bear dwelling on. I have no idea when I actually contracted hep c but I'm certain it was decades ago, since I was diagnosed about 10 years ago it explained a lot about how I've reacted to things all my life.

Anyway it's onwards and upwards now. I had my 8 week test at 9 weeks and I'm waiting for the results. I was still detectable at 4 week so I'm keeping everything crossed that I'll be clear this time round.

Thanks again for your lovely mails, they mean a lot.
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. 4 years 4 months ago #24627

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So we've now seen that happen at 2 different times, making it hard to blame intercurrent illness (something else) for it.

So in the context of your pixie size and the observation that the full dose seems to hammer you with side effect I think it's far better to continue on this 3/4 daclatasvir dose than have to stop altogether.
YMMV
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Side effects. 4 years 4 months ago #24653

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My thoughts entirely! So I'll continue with the reduced dose. I must say that today I've felt better than I have in decades. I think it's a combination of the meds (of course), a long overdue lie in, my son being on holiday and not having to cook big dinners (he's a big lad) and the rare good weather here in the Uk and I always feel better in the sunshine. It's hard to describe but it's like going back years to my old self, without the black cloud hanging over me and feeling so wiped out and old before my time. Anyway it's a good feeling and I'm so happy that I'm finally feeling the benefits of the medication, thanks to your input about reducing the dose.

I had my 8 week blood test (at 9 weeks) recently, it was just before a bank holiday which slows everything down here in the UK. Today i phoned for the results and my bloods are all fine and my liver function, with my ALT readings down from 31 at 4 weeks to 27 which is great. I still have to wait for the viral load results. I was still RNA detectable at 4 weeks so fingers crossed I'm not now but am still waiting for the result, will let you know when I do.

Feeling very happy in the here and now and can't thank you enough Dr.J.
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. 4 years 4 months ago #24654

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2bornot2b wrote:

I only came across the message I'm replying to by chance, as yet again I didn't receive a notification in my mail, yet I do get them at other times. I know you mentioned how to fix this in an earlier mail, but I'm still none the wiser - any further clues please?

If you look at the below screenshot you will see a blue "Subscribe" button. If you click or tap that it will toggle between subscribe and unsubscribe. You should receive email notifications while you are subscribed (displays as Unsubscribe) to a thread. I'm not sure why you don't always get notifications but have noticed on another site I visit that once you have one notification for the thread it stops sending more even if a dozen other people respond. After you sign in and read current posts it will start resending notifications again for the first new one which makes sense so you don't get flooded with emails. I switch off my notifications from this forum as I log in every day so don't have any experience here but assume the software behind this forum does something similar.


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: 4 years 4 months ago by Gaj. Reason: Gaj is colourblind ;~)
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