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Viewing 15 posts - 1 through 15 (of 18 total)
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  • in reply to: cirrhosis #22611
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Khilde, you make a powerful case. I’ve always associated Thailand’s medical industry with cosmetic surgery and the like, I didn’t realise it was more extensive. Either way, I’d like to say thank you to you for putting me on the right path. I didn’t think about travelling overseas for treatment, even though that was my first thought when I was diagnosed and found I couldn’t get treatment in Australia. So, thank you.

    Ariel, some doctors seem to have an unhealthy affection for interferon therapy. I get the distinct impression some of them have the idea that “hepatitis c” = “depraved dope fiend” and they conciously or unconciously see it as their duty to make the sinner repent, rather than simply treating them.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: cirrhosis #22586
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Hi Gaj, you make valid points there and by and large, I agree with you, but bear in mind this surgeon is not such a guy as inspires confidence.

    So when he gave me the results, he started by saying the biopsy showed fibrosis and not cirrhosis. Then he went on to say that you really need a dozen biopsys and take the average to get a good result, after that he said he thought I had cirrhosis anyway so that was what he was going to diagnose, and then he went on about “You must start interferon therapy immediately or you will die”. He didn’t give me any reason why he’d decided to diagnose cirrhosis, and he refused point blank to give me a copy of the biopsy report, but every medical report he has sent to my GP since then has simply stated cirrhosis, without any mention that that was not what he actually observed.

    You see why I’m a trifle sceptical about this diagnosis, particularly when it’s flatly contradicted by another doctor.

    Still it looks like I may have some options for a third opinion!


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: cirrhosis #22578
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Hi folks, thanks for your interest.

    You’ve given me some things to think about. As a self funded retiree, I have enough income to support a modest lifestyle. Rapidly becoming more modest thanks to the economic policies of Howard/Abbot/Hockey. But not Turnbull, whose only policy seems to be to try to look beautiful and make everybody love him. However I don’t think I can manage a trip to Bangkok. I can just imagine the conversation with the dear little wife:

    “So long, dear, I’m just off for a week in the sex capital of the world”
    “Oh, that’s nice, dear, have a nice time.”
    yes

    On the other hand, the dear little wife has friends in India she visits on occasion. From where we live in the quaint medieval town of Adelaide, there’s not that much difference in air fares to either Bangkok or India, plus the Indian friends lend her a granny flat to stay in when she visits, plus the friends have already said they’re happy to help me source medication or whatever. So, yeah, a trip to an Indian clinic seems a definite possibility, and probably easier than trying to handle waiting lists and referrals to try to go to an interstate clinic in Australia.

    I’m not that keen on visiting India. The only time I’ve been there, I found it dirty, smelly and packed full of people, most of whom seemed to be trying to put their hands in my pockets. But maybe I’ll give it a second try.

    Thanks for your suggestions folks.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: cured #19518
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Thank you folks, for your kind sentiments, I appreciate it.

    And, Mike, you’re quite right, credit goes to Dr Freeman. Even though I am not a patient of Dr Freeman, it was his example in treating patients, and Greg Jefferys example in treating himself, that finally gave me the confidence to send $5,500AUD to the heathen Chinee (prices have dropped since then).

    Although, in fact, the results were fairly magical, within the first week I stopped shitting blood – always a good sign – and the LFTs at 4 weeks clearly showed I was getting all better. After that, it was easy.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Beaches Treatment – Harvoni (Aus PBS) #14261
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Hi Doctor James,

    Thanks for the offer!

    In fact, this clinic rang my GP 6 or 8 months ago and told her “Don’t give this guy a prescription, he’s trying to import illegal generics from overseas”. This caused a certain amount of stress between self and GP. After that incident, it’s possible I neglected to mention to either clinic or GP that I’d sourced my own medication from Mesochem without a prescription.

    I’m only hanging round the clinic now in case I relapse again and need re-treatment, but you’re right, if I do have to be treated again, I would be better off seeing someone like you rather than going through the clinic.

    I’m sorry, I didn’t mean to be hijacking this thread.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Beaches Treatment – Harvoni (Aus PBS) #14256
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    I’m wondering where the other patients are with these Aussie PBS drugs
    I have friends all still keeping the seats warm at my hospital and also interstate
    Other Aussies can you share your knowledge please?

    I had an appointment at the liver clinic here in Adelaide in February, a couple of weeks before the PBS drugs became available. The specialist told me they would call me back maybe in June to prescribe Harvoni. This is the same guy who, for years, has been telling me “You must start interferon therapy IMMEDIATELY or you will DIE”. Thats his emphasis, not mine. Whenever he starts talking about interferon he gets excited and shouts and bangs his fist on his desk. Now that he’s got something that actually cures HepC, it suddenly doesn’t seem to be urgent any more.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: HCV RNA UNDETECTED #8165
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    GAJ,

    I think you put your finger on it. With a replication rate like that, the little horrors could go from a few stragglers to an invading horde in a matter of days – or even hours.

    Hamilton,

    It looks like we’re both going the same path. According to the EASL guidelines I should be taking 24 weeks of ribavirin, but opinion seems to be growing that ribavirin has big side effects but little effect on the virus. Since the last time I took it, it seemed to have no effect at all, I’ve decided to give it a miss this time, and just take sofosbuvir+ledipasvir.

    dointime,

    Thanks for clearing that up. I’ve seen the term viral breakthrough in the literature and wondered if that was what I had. I think if I had been treated just with interferon+ribavirin I would have been a non-responder, but the addition of simeprevir made it look as if the therapy was working. Still, its all academic now.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Mesochem APIs lumpy #8158
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Hi dt,

    I put my sof in a bowl and mixed it for a while with an egg whisk till it came out as a more or less smooth powder.

    If you encapsulated it with lumps I can’t see it making any difference except to maybe digest a bit more slowly.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: HCV RNA UNDETECTED #8129
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    I’m not sure it is “just a few stragglers”.

    I was treated a year or so back with 24 weeks of simeprevir+interferon+ribavirin. At week 4 my VL was <15. At week 12 my VL was undetected and my LFTs were like a teenagers. At that point the clinic said "You're cured. We'll stop the simeprevir and you can have another year or so of interferon+ribavirin to make sure you stay cured."

    I wasn't very happy about that, but I couldn't have taken any more simeprevir anyway, the side effects were horrendous. I figured I'd continue the interferon+ribavirin at least to the end of the 24 week treatment. At week 16 (4 weeks after finishing the simeprevir) my LFTs had gone through the roof. At week 24 my VL was 17,000,000. 5 times higher than when I started treatment. At that point I dedcided the interferon+ribavirin wasn't doing me any good at all, and stopped taking it.

    So my relapse was so massive and so fast (within a couple of weeks to make my LFTs react like that) that I just don't think a few stragglers could have done it. Even though my VL had been zero or approximately zero for months, there must still have been a massive stock of little virus beasties just waiting to jump out and put the boot in as soon as they got the chance.

    Incidentally, the clinic's response to this was along the lines of 'you can't relapse while you're on therapy'. The actual words the nurse used were "We know you didn't take the interferon, you might as well tell us". It's support like this that makes it all bearable.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Australian Customs #2184
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    They’ve done it to me again!

    In the Original Post I told how Australian Customs held my first order of sofosbuvir + ledipasvir, and wouldn’t release it till Mesochem sent them additional paperwork. Now for my second order, I asked Mesochem to send the paperwork up front, but still customs holds it!

    This time they say:

    Itemized breakdown of product composition required.
    Recommended action: Shipper to provide.

    Description provided is insufficient to classify commodity.
    Recommended action: Shipper or Importer must provide a more detailed description of goods.

    They want to know what it’s made out of???

    Is it just me? or does everybody get this sort of hassle?


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: sof plus simeprevir or sof plus declatasvir or ? #1508
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Hi Miko,

    My personal experience: I’ve been treated with Simeprevir+interferon+ribavirin. The Simeprevir side effects were by far the worst. I thought I was going to die. Once I finished the Simeprevir part of the course, the interferon side effects were, in comparison, just mildly unpleasant.

    Also, no bike riding on Simeprevir. After the first week, every time I went out, my skin started peeling off, and I grew big, red blisters on my eyeballs. After the second week, I was bed ridden. On top of that, the treatment was totally ineffective.

    On the other hand, maybe Simeprevir will work for you.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Mesochem #1304
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Thanks for that. The only contact I’ve had with Mesochem is via a single email address, and if I know the money I pay is going into Mesochem’s bank account it gives me more confidence the email contact is valid.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Australian Customs #1303
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    So does this mean I have to specifically ask Mesochem for these documents at the time I place the order, then forward them to customs?

    I ask because the only paperwork Mesochem sent me this time was a copy of the Fedex Air Waybill, and I have to go through all this again in a couple of months.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Australian Customs #1295
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    My shipment has now arrived. It contains 2 packets labelled “Sofosbuvir” and “Ledipasvir”. The paperwork included is:

    4 copies of a “Certificate for safe transport”
    1 copy of a Packing list, in my name.
    2 copies of a Commercial Invoice in someone elses name.

    I thought it should have included Certificates of Authenticity or somesuch?


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

    in reply to: Australian Customs #1273
    PKQ
    • Topics: 6
    • Replies: 18
    • Total: 24
    • Treatment Warrior
    • ★★★
    @pkq

    Hi Emilio,

    Thanks for your offer, I appreciate it!

    I did actually contact Rachel after I posted here, and she said she had already forwarded the paperwork to customs. I have just looked on the Fedex website and Behold! my package was released by customs at 2.39 PM today (Sydney time, I guess). So it looks like I’m back in business, with Fedex showing an estimated delivery tomorrow.

    Thanks again for your interest.


    GT 1a
    cirrhosis (or not, take your pick)
    2015 – failed treatment with simeprevir+inteferon+ribavirin
    23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir

Viewing 15 posts - 1 through 15 (of 18 total)