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  • in reply to: Daklinza/Sovaldi- side-effects and treatment duration #26676
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    SVR24- and straight back into full-time employment after a horrendous decade of HCV/interferon hell and accompanying poverty!

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #25918
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    Hi. It’s time to update my situation for reference to future readers. I treated for 16 weeks with Daklinza/Sovaldi. I elected to wait until the 3 month post treatment mark for testing, as my then-side effects began subsiding somewhat. Results came back a week ago and I received good news- I am non-detectable for HCV 3. I will get a final test done next year to give full peace of mind, although I am aware current standing is to take the 3 mth post test as virtually final. My remaining treatment side effects include some neuropathy to hands/feet, some tiredness/mild fatigue and at times a flat mood. I was Genotype 3a with F1, treatment experienced (Pegasus/Ribavirin). Best of luck to all. X

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #25139
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    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?

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24778
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    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.

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24777
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    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!

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24766
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    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.

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24743
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    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!

    in reply to: 59% of people have at least one RAV (Resistance Variant) #24619
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    It doesn’t appear that specialists here in Oz are checking for any of these RAV’s before writing out scripts for standard Genotype specific DAA treatment. I have read many times that testing for certain strains of RAV’s are recommended prior to treatment, as obviously this would factor into duration and combination alterations.

    Perhaps the wording should be changed from ‘recommended” to ‘required’?

    in reply to: Disturbing 2010 study re: Early menopause/Lack of response #24615
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    So, as this study indicates, women that are in early menopause (whether natural or medically induced-grrrrr) have a much higher risk of non-response to pegylated interferon/ribavirin treatment.

    This leads me to ponder whether this demographic would similarly be at a higher rate of non-response or alternatively, relapse, with the current DAA’s. Perhaps the hormone imbalance may make it more difficult to eradicate the HCV?

    There is a rapid progression of symtoms and disease in post menopausal women too.

    I feel that the S/D treatment I am on only appeared to begin working after week 10, and foolishly did not adamantly request the hospital clinic test my viral load at week 4 or 8. I have just had my 12 week blood test done, and although according to the nurse ‘there is no evidence to extend beyond 12’, I am considering going beyond the extra 4 weeks I purchased from Kingswood Pharmacy.

    Any input would be welcome as I grapple with this scenario and continue enjoying my present state of medicated nirvana.

    in reply to: Disturbing 2010 study re: Early menopause/Lack of response #24547
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    This is the link to the study mentioned above.

    in reply to: How manny GT3’s on this forum are cured? #24453
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    Thank you LondonGirl and others for your kind sharing of advice and personal treatment stories. I have had an informative reply from Dr Freeman (posted under ‘Sovaldi/Daklinza-side-effects and treatment duration’;), which has been a marvellous help as well. All the best!

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24450
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    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!

    in reply to: Process within Oz for purchasing non-PBS/further DAA’s #24446
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    The process was easy! Yesterday I firstly rang and got the go-ahead with the nurse at the hepatitis clinic of the hospital (where I obtained my current 12 week course), then booked in to see a local GP. A script for a further 4 week course was made up and faxed to Kingswood Compounding Pharmacy at 7 pm. I followed up this morning with a phone call to the chemist (Nabil- who was great) and checked the script had arrived, address details, etc. Late morning I was contacted and told the DAA’s were ready to send! I paid the fee via credit card ($575 which included express post delivery), and can expect them in the mail either tomorrow or Monday! Yay!

    in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24397
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    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!

    in reply to: How manny GT3’s on this forum are cured? #24396
    AK123
    • Topics: 3
    • Replies: 16
    • Total: 19
    • Acolyte
    • ★★
    @ak123

    Hello and good luck to all currently on treatment, including myself!

    My burning question is treatment length (non-cirrhotic)- 12 weeks or more on Daklinza/Sovaldi? I can’t seem to find trial results that show different treatment time-frame results. Ie. 16 weeks, 24 weeks as alternatives. Anyone have an idea?

    It would be great for those retreating for Genotype 3 to mention their new drug combination and length too, please.

Viewing 15 posts - 1 through 15 (of 16 total)