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6 years 6 months ago #9233

Hi Re_Roll,

I am new here, but have been on many forums, Australian, and world wide, U.S. etc.
I love the fact you brought up the topic about having a section just for moaning, bitching, about anything we like! :ohmy: :woohoo: :)

I know what you mean, that perhaps this area is for that, but in my experience on other forums, if you do have a rant about something and really tell it like it is, in the "patient forum"; you get comments back saying "you're being too negative", etc; when that shouldn't matter, if you are feeling negative, shitty, whatever, it's best to get it out, and it is all part of this horrid disease, and treatment/side effects, yet some still get narky if you do it. (I'm not saying that happens here, I'm new so don't know.) :)

Some people are all about, being positive, (which is great when you can), "don't say too much about the side affects, or you might put others off". Come on, this isn't the Teddy Bears Picnic, and we all know it, so let's not pretend.
Myself, I want to hear all that others have to say, good or bad, it's all information we need to know. As I've said, if you can't cope with it warts and all, then you would just avoid the "Rant and Rave" section, easy.

So, yes I agree, put up a section that is for bitching away as much as you want, however you want.
Then if others don't like it, they don't have to go there and read it, I know there are others that feel the same way.

Anyway, I wish you all the best,
Cheers


Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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6 years 6 months ago #9246

re-roll

I too have been watching the guest numbers v the member numbers. I don't know what to make of the fact that there are always overwhelmingly more guests than members online. Maybe what is at least as significant is that here we can see these numbers. When I used to be on medhelp they didn't provide these stats, and I haven't consistently used other sites, so I don't have anything to compare these stats with.

So are there other sites which provide these stats? And are the numbers comparable?
dt

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6 years 6 months ago #9320

I think it represents the highly private nature of HCV and a not unreasonable desire not to give any personal details to an anonymous website, at least not without checking it out in detail first.

If you don't have forced registration to post then you get over run by spam bots, but then registration requires giving up an email address. I suppose not everyone is familiar with using "burner" email addresses for such purposes.

I seem to spend half my day clicking the "Unsubscribe" button on emails.

The actual number is the number of different sessions browsing content in the last 600 seconds. Each device creates its own session so it's actually a count of devices rather than people, although the numbers are similar. Right now it looks like:


Attachments:

YMMV
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6 years 6 months ago #9323

I also believe that this site is starting to built a large reservoir of knowledge, both in the forum and the editorial pages that are seen as an open, honest and reliable guide of how to source quality generics and what to expect while undergoing treatment. Certainly the Guest numbers in comparison to other sites that I have visited (but rarely posted on*) would seem to indicate this. Many people who would not consider frequenting forums will be using the provided information to make informed choices about taking charge of their own health, possibly in a more DIY manner.

While I understand and respect people's wish to remain anonymous and/or not participate in discussion themselves, I do regret that we don't gain their valuable experiences to add to the knowledge available here for other readers. It really would be of value to get input from an even larger cross section of people.



* I'm not really the Internet tart that my post count on here would seem to indicate. ;)


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: 6 years 6 months ago by Gaj.
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6 years 6 months ago #9350

Not a Tart!!
I am devastated. All my GAJ perceptions dashed. Woe is me...


This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
Last Edit: 6 years 6 months ago by mgalbrai.

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6 years 6 months ago #9361

Interesting map, doc. It appears the western hemisphere has the lesser of the devices which is
understandable since this website is in the eastern hemi with most devices from the Aussies.
I thought more devices would be from North America. Hopefully, your clinical trials lead to
more inquiries.

Gaj....very good point. Information and feedback is sorely needed, but the medical profession
does not want us to be that educated. When the time comes, it's DIY for me (I think?)


contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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6 years 6 months ago #9362

The Doc is right. Many people in the U.S. (and elsewhere) are very quiet about their disease. They are also under a constant barrage of warnings about imported medications being scams and unsafe. They are so conditioned it is hard for them to believe that quality, affordable generics are available and can be "in hand" less than a week after ordered. That mistrust, I feel, carries over to any website that promotes the importation of generics as well. I have seen very high numbers in public chat, sometimes over 300. The site is very slow loading during those times, so I think the numbers are accurate. A lot of people see what is happening and many are probably using the information found here to import generics, but are reluctant to register. In my case, I was so scared, back in the old days (4 months ago...), that someone would read my request about importing medicine and use that information to seize my package or shut down the source. Things have changed very quickly, but people and their perceptions will take much longer.
We need to tear down that wall of ignorance and misconception brick by brick. By being selective in which bricks we remove, the whole thing may come tumbling down sooner than we think.
Mike


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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
Last Edit: 6 years 6 months ago by mgalbrai.
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6 years 6 months ago #9363

"don't say too much about the side affects, or you might put others off".
I agree, there is some of this on lots of forums, but I would like to say, I have never done this and always the truth. We need to tell the truth, so people can trust what we say , you know? But take care to be sensitive about it.

Meanwhile, my sx on Cipla's Hepcivir-L have been :
A more cheery disposition
Smiling at people (Yes, you heard me right!)
More energy in the day
Brain foggy in the evening
One or two very mild headaches at the start of tx , drank water, they went
A huge appetite (hooray)
Weight gain (I needed it)
Slight insomnia occasional, nothing to bother me
Speedy in the mornings (love it!)

Also, today I found out, that after 2 weeks on tx, all my liver functions tests are well inside normal markers, ALT 23

I have had plenty of moans and groans in the past though :-)


GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 6 years 4 months ago by LondonGirl.
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6 years 6 months ago #9364

M....As you will recall, I emailed you in December when I joined here. I was hesitant to post
my question on this site. I feel a whole lot comfortable now, say 98 per cent. The other 2%
is in my inherent nature which will always be there.....hence, no Farcebook or Twatter.
Maybe that will change one day. Edward Snowden, like him or hate him, opened a can
of worms that will be debated for a long time....e.


contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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6 years 6 months ago #9372

800 registered members as of today!!!
Happy Dance!!


This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24

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6 years 6 months ago #9373

mgalbrai wrote:

800 registered members as of today!!!
Happy Dance!!

That's great! For a frame of reference do you know what it was on 1/1/16?
To quote my self "I searched but could not find.......When did this website
first happen. It appears to be 5 or 6 months ago.


contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24

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6 years 6 months ago #9375

Hi re_roll,

Scroll to the bottom of main forum pages and click on User List. You can then click on the column headers of the user list to sort and the page numbers at the bottom to scroll. Bit clunky but gets you there. B)

- 1st Jan was 800 - 112 = 688 members

- Although the first members look to be admins in August, probable start date is 1st Sept with Emilio's registration?


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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6 years 6 months ago #9376

re_roll wrote:

Gaj....very good point. Information and feedback is sorely needed, but the medical profession
does not want us to be that educated.

There has never been a better opportunity to be educated, via the internet and sites like these. I have come to see that I can't afford not to be. My GP has missed all of the important turning points when I went to him and I could have been diagnosed but was not. Lately I have come to suspect he missed diagnosing a thyroid problem after I had interferon tx. Here in UK they penny pinch on the tests, only do one when actually 6 are necessary, then tell you you are fine, but you are not. So another decade goes by fighting fatigue before you realise the GP gave you a bum steer. It is only in the last few years that we have had the technology to take charge of our own health, get our own blood tests, read up on all the relevant information from others who have been through it and done the ground work for us. To me, all this is a bloody miracle compared to relying on the medical services.

dt

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6 years 6 months ago #9383

I should clarify that the information and feedback I was requesting was from the many silent members and guests on here rather than medical professionals. It would be fantastic to get input from the latter but that seems unlikely in most cases even on the basis of anonymity.

When I first found this site my intent was just to source quality, tested generics and go quietly on my way and to that end I placed an order with the buyers club without even joining the forum as I am sure many others have done. But while awaiting the arrival of my meds I started reading here and found a valuable information resource and support group and decided that I wanted some of that and to maybe put a little back if I could. So here I am. :P

And one of the benefits to me of this site is that rather than just accepting what my doctors tell me about my HCV (and the rest of my health) I now have the confidence and knowledge to ask them the right questions about the best options and hold them to account if their answers are not satisfactory or they try to warehouse me. So all of us now understand that it is a partnership with my best health being the required outcome. To my way of thinking this is a far better situation than previously.


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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6 years 6 months ago #9384

No worries, Gaj. I knew what you meant. We should not allow any doctors on this site except Dr F. and his staff anyway :P
But for the uninformed, your clarification should help some newbies who just tuned in.


contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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