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  • 21 August 2019 at 2:12 pm #29398
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Thanks Mar!

    YMMV

    24 August 2019 at 9:34 am #29400
    Avatar photobarry666
    • Topics: 2
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    • Total: 38
    • Treatment Warrior
    • ★★★
    @barry666

    Sorry about the delay in replying Mar. I work for a suicide prevention charity where we take people in and give them rest and respite and good food to help them to find some hope and a way through. Its free of charge and we sometimes get big spikes in applicants and the past week or two have been crazy. check us out at: www,taranakiretreat.org.nz
    Thank you for looking that up for me. I will start to step down slowly off the Seroquel. Shall I talk to my GP about how far down I should step and how fast?
    g

    24 August 2019 at 8:06 pm #29401
    Avatar photoMar
    • Guardian Angel
    • ★★★★★
    @mar

    Hi Barry, no worry at all, great work you guys are doing in that charity :+1:

    Yes, please talk to your GP about how far down and how fast you should step down off Seroquel. He may even switch you to an alternative medication altogether just for the duration of the Hep C treatment.

    Please let us know if you need any more help and keep us updated on your progress.

    Making the world a better place – one patient at a time.

    25 August 2019 at 1:54 pm #29402
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hi barry666,

    Seroquel is “industrial strength” so it’s definitely something you don’t just stop cold turkey.

    Talking to your GP is a great idea. You will be taking Maviret + Sofosbuvir so we want your medications to play well with this combination.

    If you put in Maviret (Glecaprevir/Pibrentasvir) + Sofosbuvir here and then Quetiapine

    You will see the interaction – this basically says reduce the Quetiapine dose a bit, however there are alternatives:

    https://www.hep-druginteractions.org/view_all_interactions/320174?co_drug_id=1455

    Risperidone and Olanzapine are similar so you could swap to them but a simple dose reduction (when you start treatment) would probably be all that is required.

    Summary:

    Coadministration with quetiapine does not preclude the use of glecaprevir/pibrentasvir. Quetiapine is metabolised by CYP3A4 and in vitro is a substrate of P-gp. Concentrations of quetiapine may increase as glecaprevir/pibrentasvir is a weak inhibitor of CYP3A4 and P-gp (27% increase in AUC with probe 3A4 substrate midazolam; 45% increase in AUC of tacrolimus).Whilst unlikely to be clinically significant in most patients (a recent study having looked at the efficacy and safety of G/P in patients with chronic HCV and psychiatric disorders) , caution is advised when using higher doses of quetiapine (e.g. over 400mg/day), or with liver impairment, the elderly, patients with cardiac conduction abnormalities or other drugs known to prolong QT interval. Concomitant administration of cytochrome P450 3A4 inhibitors, such as HIV-protease inhibitors, azole-antifungal agents, erythromycin, clarithromycin and nefazodone, is contraindicated in the European label for quetiapine.

    YMMV

    4 September 2019 at 8:58 pm #29412
    Avatar photobarry666
    • Topics: 2
    • Replies: 36
    • Total: 38
    • Treatment Warrior
    • ★★★
    @barry666

    I am visiting my doctor tomorrow to sap out the seroquel with an alternative as you suggest. I have also just had my 6 monthly ultrasound and blood test so I am going to see what he thinks of the results. Shall I add them on to this forum when I get them scanned to see what you all make of them and add them as an update for a “state of the nation” picture for a clearer idea for the doctors before the new course of meds is started?

    Thanks so much for helping me out here everyone. Your opinions, advice, friendliness and experience will mean I will have a clearer picture of whats happening inside me and also to those who have worked hard to be able offer me another chance to assault the Hep C again for free. as the cost is what would have kept me locked out

    With respect and humility…

    g

    4 September 2019 at 9:19 pm #29413
    Avatar photobarry666
    • Topics: 2
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    • Total: 38
    • Treatment Warrior
    • ★★★
    @barry666

    Sorry, I realise that is probably rude to ask but is there any updated information as to when the re-treatment regime/test trial is likely to start? I ask mainly because of reasons like the change off Seroquel and the possibly delay it might cause me as i carefully step down from it after about ten years. Also to prep mentally, make sure my support network is in place and to advise my employer about the course of meds I will be taking.

    Thank you again…endless questions…

    g

    4 September 2019 at 11:47 pm #29414
    Avatar photoMar
    • Guardian Angel
    • ★★★★★
    @mar

    Hi Barry, yes please post the name of the alternative medication to get reassurance that it will be OK to take with the new treatment. As far as the timing of the NZ re-treatment trial, Dr James is the one who may be able to give you a time frame.

    Making the world a better place – one patient at a time.

    5 September 2019 at 2:13 am #29415
    Avatar photobarry666
    • Topics: 2
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    • Total: 38
    • Treatment Warrior
    • ★★★
    @barry666

    Sorry to keep bugging you, but how do I get in touch with Dr James?
    g

    5 September 2019 at 3:58 am #29416
    Avatar photoMar
    • Guardian Angel
    • ★★★★★
    @mar

    Hello Barry, no worry. Dr James responds to all forum posts.

    Making the world a better place – one patient at a time.

    6 September 2019 at 6:52 am #29418
    Avatar photobarry666
    • Topics: 2
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    • Total: 38
    • Treatment Warrior
    • ★★★
    @barry666

    I went to the doctor today to find out how my ultrasound looked from earlier in the week The doctor said no cancer but there was pressure on my Portal vein (?) and that I need to do something about it soon. Ive attached the ultrasound notes for your info.
    I am going to come off the Quetiapine as it was only apparently helping me to sleep but was initially prescribed as I was having alcohol psychosis but they never got round to telling me that I didnt need it anymore. I plan to not be taking it at all by the first day of treatment. Doc will offer me Melatonin if sleep becomes an issue. Im a hard egg and have endured worse than a step down off seroquel. And one less poison to put in my body.
    g

    Attachments:
    7 September 2019 at 2:47 pm #29419
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hi barry666,

    I’m pretty sure I copied you into an email to Prof Gane so you have my email address.

    If you can get your specialist or GP to a) Prescribe you 16 weeks Maviret and b) Fill in a Medsafe form for 16 weeks Sofosbuvir we can (potentially) get just cracking now for you.

    YMMV

    8 September 2019 at 3:20 pm #29421
    Avatar photobarry666
    • Topics: 2
    • Replies: 36
    • Total: 38
    • Treatment Warrior
    • ★★★
    @barry666

    Hi Dr James.

    That is music to tired ears! Thank you so much for this opportunity to slay the beast in my body. It means so much to me to be able to have another chance to rid myself of Hep C.
    I have the email you mentioned but I didn’t know if it was appropriate for me to use it. I have a few questions for you regarding treatment, support and general advice which I will direct to your email address asap.
    I just want to say a heartfelt thank you to everyone on here that has patiently answered my questions, reassured me and just taken the time out of their days to reply to me. You are all amazing people that deserve the very best that life can give you. When wrote my first entry I was resigned to a short, dark future full of increasingly unpleasant symptoms and was seriously questioning whether I wanted to endure it or simply opt out of it altogether. I now have a little hope in my life thanks to the folk on this site
    I have no money and my pride will not allow me to even ask others (who don’t have any money either) to contribute to a situation I inflicted upon myself. That HUGE hurdle has been eliminated and I feel humbled.

    The system wouldn’t fund me but Ive learned in life and from the wise advice of my late Father and the unshakeable hope and support from my elderly Mother there is no point in anger, frustration or blame. Ive learned that if I own a situation created by myself I get to piece of mind quicker and acceptance appears shortly after.

    Everyday at my job, I meet people who have survived brutal suicide attempts, individuals that have been “pulled back” from the edge and are in a hell so dark our small team have to convince them to have one last go at life with us walking beside them. We have all lost a few of these people which devastates us every time, but in a couple of years we have had hundreds that leave us after close support, good food, sleep, listening and continued support for as long as they need it. What they go through makes a my Hep C and Cirrhosis look insignificant in comparison. They inspire me every day with the bravery and determination to live

    However, I know that there is a reasonable chance that the treatment process may not be effective, and being a pessimist (I call it realism) I have to have that scenario in the back of my mind just in case

    I will report my progress to you all along this next journey. Wish me luck. I’m gonna need it!

    Respect to you all

    Barry (my name is actually Gordon or “G” for short)

    g

    8 September 2019 at 6:43 pm #29422
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hi G,

    Drop me a line by email and we’ll get going.

    Best Regards

    James

    YMMV

    8 September 2019 at 7:25 pm #29423
    Avatar photoMar
    • Guardian Angel
    • ★★★★★
    @mar

    Thanks for your great post Gordon, you’re very welcome, but it’s Dr James really who deserves any credit. Looking forward to hearing good news from your upcoming treatment journey.

    Making the world a better place – one patient at a time.

    14 September 2019 at 3:45 am #29441
    Avatar photobarry666
    • Topics: 2
    • Replies: 36
    • Total: 38
    • Treatment Warrior
    • ★★★
    @barry666

    H there.
    I have my first months supply of Mayvret sitting here and a script for three months more teed up at the Pharmacy. The extra meds are on their way to me. When they are all here I can start my treatment.
    I have my 6 monthly appointment with the specialist nurse on Tuesday morning so Im hoping that they will provide support to me in some sort of capacity.
    I know it isnt advisable but Im 5 days into cold turkey Quetiapine withdrawal which isn’t pleasant but Ill get through it dead or alive so that it is out of my life before I start the Hep treatment. It feels like Ive been hit head on by a train but my eyes are on the prize. Sleep is erratic but my GP has advised that he will help me with that and I only have to ask if it gets real bad.
    Not scared about the treatment at all apart from knowing that this will be my last chance due to Cirrhosis etc and that state of my insides. Withe the treatment taking 4 months and the 3 month wait after that to check whether I have cleared it, it’ll be around April 2020 before I know. I have to look at both sides of the treatment coin as I am a hard headed pessimist (realist) so need to prepare either way.
    I need to clarify with you all the outcomes and need an honest answer if you can.?
    1. If the treatment clears the Hep and depending on the variables, I will be left with maintaining my cirrhosis and checking regularly for cancer and more deterioration right?
    2. If for some reason it fails to clear it, the liver disease will slowly progress over time and eventually will turn into liver failure/cancer. I know that a transplant wont be offered to me if Hep C is still rampant and I don’t think I would ask for one even if able to.
    Are those scenarios reasonably accurate? I realise you cant predict the future but in general terms that’s the way it would roll wouldn’t it?
    Thanks all. Ill keep you up to date on the treatment as it starts and goes on.
    This forum has been amazing to me and has not only allowed me to get the treatment opportunity, it has also given me answers to questions I simply cannot get answered locally.
    So glad FixHepC came into my life.
    cheers all
    G (Gordon)

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