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  • in reply to: Options for retreatment #21857
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax
    ”J. wrote:

    Thanks for posting this. Have been reading most all the material available online regarding HCV retreatment. The collection of work presented here by David Wyles MD at UCSD is interesting to be sure.

    From the perspective of a patient seeking retreatment – I view information such as this as very encouraging – though academic.

    Using the existing AASLD guidelines for initial therapy – medical coverage here in the States for approved HCV DAA medicines is often denied to patients without significant fibrosis scores.

    Following the new and current AASLD guidelines for retreatment – “deferral of treatment” is recommended for patients who do not have cirrhosis and do not have reasons for urgent retreatment.

    http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed

    Most any retreatment plan using approved HCV medicines here will be unavailable through medical insurance with the existing guidelines and drug costs – emphasis on the latter.

    Using the flow chart shown above from Wyles’ presentation – the most basic retreatment option (no NS5A RAVs) calls for 24 weeks of Harvoni – current retail price here is just over $183,000 USD. The base retreatment option when some known NS5A RAVs are present calls for 24 weeks of Sovaldi and Olysio with ribavirin – current retail price here is over $305,000 USD.

    While government agencies and insurers have negotiated significant price discounts from the drug manufacturers – these reduced prices are not available to individual patients seeking treatment.

    Any realistic retreatment regiment is thereby limited to available generic medicines. This means that new drug studies – however promising – will only produce practical results sometime in the future when and if such medicines are manufactured as generics. Note that Olysio (simeprevir) – currently recommended for retreatment – has yet to become readily available as a generic.

    Crossing the first hurdle for treatment has only just recently become a reality for many with the availability of generics. The second hurdle for retreatment is somewhat higher making resources such as FixHepC and access to affordable generic medicines even more important.

    J

    Any tests done for RAV?

    U are the first person i know relapsed on viekira pak.

    in reply to: In search of perfectovir #21856
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    • Guardian Angel
    • ★★★★★
    @tweakmax
    coral wrote:

    Thanks for posting this presentation. It really makes the point (Dr James has posted it separately) that from the broader population’s perspective treatment rate is more important than the SVR rate. It also notes that treatment should move out of speciality clinics which would assist in more people accessing the treatment which reminded me…..

    I have recently relocated to the Queensland coast. The other day I went to see a GP who I had visited once a few years ago who was aware of my previous HepC status. She was delighted with my news and said that she was now able to prescribe the HepC medication (although she was not fully conversant yet with it all – so I told her to visit this site!). She’s a clever and compassionate doctor and I was happy (to the point of tears!) that she would now be in the position to help more people.

    Hope u get treated again soon coral

    in reply to: How manny GT3’s on this forum are cured? #21827
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    • Guardian Angel
    • ★★★★★
    @tweakmax
    coral wrote:

    Hi Hope. I know why you are anxious at the moment but the odds really are in your favour. G3 is a bit harder to clear but as Hazel said there is a decent percentage of people that do and they do not necessarily report on this forum.

    I am a 1a that recently relapsed but I know that I have options for retreatment and will beat it in the end. I know when I post about this it can cause a bit of anxiety so I try to minimise it but I agree with Hazel that it all needs to be reported.

    Hang in there Hope. Wishing you all the best for your next results. #flower #flower

    I was also 1.9 million before starting treatment (type 1a)

    Your ALT still look better than mine last time (mine was 230)

    Hope you restart treatment again and SVR too!

    in reply to: SVR but still not feeling right? #21811
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    • Guardian Angel
    • ★★★★★
    @tweakmax
    dointime wrote:

    My broad reason for starting this thread has been this:

    Up until today, the opportunities to study and collate a body of knowledge about post-SVR issues have been neglected. That’s understandable. HepC specialists have had their hands full with firefighting active hepC infection. When people got to SVR who can blame them for considering that their job is done and they have plenty more infected queuing up to be taken care of.

    So what has happened is that post-SVR people who still had issues went back to their GPs and were hived off to whichever other specialist was considered to be relevant to their particular post SVR issues. People got passed around to various specialists, especially if they had autoimmune conditions which are notoriously hard to diagnose. Many people got nowhere. The trend towards increasing specialization in medicine contributed to this situation. Nobody has been equipped to get the Big Picture.

    I’d like to see this situation improve. Maybe there will be a chance for that in the future now that the DAAs have arrived and the pressure eases off to treat the infected, as and when that happens. There needs to be a knowledge base that post-SVR people and their doctors can tap into. It can be started now.

    That’s what I wished to draw attention to.
    dt

    Have u SVR24 John?

    in reply to: How long to wait before retreatment #21810
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    • Guardian Angel
    • ★★★★★
    @tweakmax
    Meg wrote:

    Very interesting thread!

    Tweakmax you wrote : ” But would there be resistance e.g. worst case is sofosbuvir resistance at position S282T, then it will definitely affect future treatments as sofosbuvir is still the backbone for HCV treatment/retreatment
    ” .

    Does it mean that longer treatments with sofosbuvir may cause the Hep C virus to become resistant to it? What comes to mind is when treating G1b – no cirrhosis – tx naive – low VL it would be the ideal to treat it with 8 weeks instead of 12 weeks following Gilead’s guidelines. Because if there is a relapse – and 5 % will relapse anyway no matter how well patients follow any specific tx (it is a matter of statistics) there is smaller chance to become resistant to sofosbuvir on a 8 week tx than on a 12 week tx. Right?

    Must ask the doc haha

    What I know is, those on a 8 week tx, if relapsed, have a good chance of curing if do the tx longer the second round!

    If I were u, I will just do the normal 12 weeks. 8 weeks is too risky really. But it is your personal choice ;)

    in reply to: How long to wait before retreatment #21799
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax
    fitz wrote:

    Dr Freeman, I have been wondering about the potential for patients who do not achieve SVR to stay on current generation DAAs until newer more effective regimens come along.

    If HIV meds can keep the ravages of that virus at bay for HIV patients, would a similar approach for HCV patients be an option?

    Good question!

    But would there be resistance e.g. worst case is sofosbuvir resistance at position S282T, then it will definitely affect future treatments as sofosbuvir is still the backbone for HCV treatment/retreatment

    in reply to: How long to wait before retreatment #21798
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax
    ”James-Freeman-facebook” wrote:

    not heard of someone getting SVR 12 and then relapsing, please enlighten me if this has happened

    There is one patient here who got SVR12 and relapsed.

    https://fixhepc.com/forum/viral-load-and-svr/1208-svr-24-detected-again.html

    It is really rare, under 5%, to relapse between SVR4 and SVR12.

    It is extremely rare, under 1%, to relapse from SVR12 to SVR24

    But sadly it is possible.

    Mathematically it looks like this:

    For the about the first 2 weeks post treatment you still have adequate levels of drug in your system to suppress most virus.

    By 4 weeks you have been on your own for a good 2 weeks so any residual virus, below the level of detection, starts to multiply and usually we can find it by SVR4 – liver functions also get bad almost as quickly as they got good.

    Later relapses probably represent relatively more unfit mutants. Mutation carries a price – slower replication. The wild type virus dominates in people because it is the best reproducer, so it out competes the mutants.

    The growth curve is exponential, 2 4 8 16 32 64 per unit time so if we start from a really low load it takes time to get to a high enough level to measure.

    Which brings us to the “how long to wait question” – being out competed does not necessarily mean disappear. Just because we can’t measure it does not mean it’s not there. Relapse after UND is proof that our tests are not sensitive enough.

    With HIV resistance relates to rate of viral duplication. Provided we get rapid suppression there is very little capacity for mutation. Existing RAV mutations can persist, but new ones have limited opportunity to be created.

    I think Jean Marc probably didn’t do SVR12 VL test.

    He only tested for SVR24 VL test after EOT and found that he relapsed.

    Quite sad for him.

    in reply to: Transmitting the virus after SVR12? #21617
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax

    I fathered two daughters even with a vl of 1.9 million. My wife is hcv free. With svr12, I am sure the chances of spreading=zero

    in reply to: SVR 24. détected again #21604
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax

    Type 4 is very rare.

    I hope you get retreated soon. The new meds have a better resistant profile

    in reply to: SVR 24. détected again #21601
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    • Guardian Angel
    • ★★★★★
    @tweakmax
    jeanmarc wrote:

    I did only svr 12,wanted to sage money as I don’t have insurance covering this trèatment

    After eot, u only did the viral load (svr24) on 19 Jul right? (And skipped the svr12 test)

    in reply to: SVR 24. détected again #21592
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax

    Did u svr12? Or u only test for svr24.

    in reply to: World Hepatitis Day – July 28th 2016 #21551
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax
    Gaj wrote:

    NOhep is also launched today.

    “NOhep is a global movement aimed at uniting those working in the field of hepatitis and others from across the world around one common purpose: the elimination of viral hepatitis by 2030. NOhep is calling on individuals and organisations across the world to sign-up to be part of the next greatest achievement, the elimination of viral hepatitis.”

    You can find out more and join up here:

    http://www.nohep.org

    2030. One year after sofosbuvir patent expire

    in reply to: G1a relapse #21510
    Avatar phototweakmax
    • Guardian Angel
    • ★★★★★
    @tweakmax
    beaches wrote:

    Is it normal to feel stressed coming up to 12 weeks post EOT?
    Every little twinge, cramp, night time waking is getting me thinking maybe it hasn’t worked. :unsure:
    No point getting tested now as it wouldn’t impact any treatment decisions. I know a Yoga sequence for emotional stability, I’ll just practice it often.

    Normal. My anxiety stops a bit after svr12

    in reply to: G1a relapse #21479
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    • Guardian Angel
    • ★★★★★
    @tweakmax
    Serg wrote:

    tweakmax wrote:

    just read the updated aasld guidelines 7 july 2016. Sof+vel+riba for 24 weeks is good for retreatment, regardless of ravs, according to studies by prof gane.

    Please be careful there – this study supports 24 weeks of sof/vel/rib after failed 4-12 weeks of NS5A (vel) containing regimen – http://www.natap.org/2016/EASL/EASL_11.htm .

    We need data from studies about retreatment with sof/vel after failure of 24 weeks course of sof/dac or sof/led. If such data will be good, then sof/vel generics may become “second line” therapy for relapsers after 24 weeks course.[/quote]

    Redemption iv or v for velpatasvir!!!!!!!!!

    in reply to: Using Milk Thistle whilst on treatment. #21464
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    • Guardian Angel
    • ★★★★★
    @tweakmax
    beaches wrote:

    Thanks TM
    Sorry for expecting everyone to be a mind reader.
    What I meant was, if your liver functions are normal and your VL is UND, will liver supplement be helpful for you?
    If not I have an almost full bottle……..

    Haha u can resume after u eot. Give it about two weeks for your system to clear first

Viewing 15 posts - 31 through 45 (of 238 total)