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Author Topic: 5 years and NOT counting.  (Read 1433 times)

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Offline James1941

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  • Posts: 29
5 years and NOT counting.
« on: September 24, 2010, 04:14:21 PM »
Diagnosed HIV+ mid-September 2005 in Krabi, Thailand where I was living at the time.  Attended the Krabi hospital twice for treatment, the second time I walked out and made arrangements to return to Australia.  Forward to 22nd July 2009 and Professor Vampire Doctor (all he wants is my blood and plenty of it every visit   hahaha) decides its time for me to start meds.

I was lucky enough to get onto a clinical trial for Raltegravir which is approved for twice a day use, the trial is to check whether it can be just as effective taken once a day.  I started meds on 27th July 2009 and my VL count went from 32,000 to UNDETECTABLE (less than 50) within a month and stays at that level today.  CD4 count went from 344 to 638 and 38% on 23rd June 2010 (latest available results).

Being a clinical trial means that the meds are supplied for free, the trial goes for up to 2 years so I have another 9 months of free meds.  Other benefits: the hospital gives me a food voucher and a drink voucher and a public transport ticket (saves me about $A15.00).

Offline Billy B

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  • Posts: 374
Re: 5 years and NOT counting.
« Reply #1 on: September 24, 2010, 06:10:37 PM »
Diagnosed HIV+ mid-September 2005 in Krabi, Thailand where I was living at the time.  Attended the Krabi hospital twice for treatment, the second time I walked out and made arrangements to return to Australia.  Forward to 22nd July 2009 and Professor Vampire Doctor (all he wants is my blood and plenty of it every visit   hahaha) decides its time for me to start meds.

I was lucky enough to get onto a clinical trial for Raltegravir which is approved for twice a day use, the trial is to check whether it can be just as effective taken once a day.  I started meds on 27th July 2009 and my VL count went from 32,000 to UNDETECTABLE (less than 50) within a month and stays at that level today.  CD4 count went from 344 to 638 and 38% on 23rd June 2010 (latest available results).

Being a clinical trial means that the meds are supplied for free, the trial goes for up to 2 years so I have another 9 months of free meds.  Other benefits: the hospital gives me a food voucher and a drink voucher and a public transport ticket (saves me about $A15.00).

Hi James- What other meds are you taking as part of your combo?
Peace,
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline eric48

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Re: 5 years and NOT counting.
« Reply #2 on: September 25, 2010, 08:49:44 PM »
Hi,

I have an interest in this matter and notice there was a presentation at the Vienna conference with mixed results (if my memory is correct, once-daily was not as efficient as twice-daily, but was as efficient on patient  who had no resistance to some PIs, or something like that...)

Looking forward to see the results of the trial and thanks for helping science move forward for the benefit of us all.

I tried to enroll into a trial here (involving Raltegravir) but was not selected

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline Inchlingblue

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Re: 5 years and NOT counting.
« Reply #3 on: September 25, 2010, 10:57:46 PM »


Being a clinical trial means that the meds are supplied for free, the trial goes for up to 2 years so I have another 9 months of free meds.  Other benefits: the hospital gives me a food voucher and a drink voucher and a public transport ticket (saves me about $A15.00).

That's great news. I'm also on Raltegravir (with Truvada) and doing well,  it's a good combo.

I was wondering about what you said above, aren't the meds free (or very inexpensive) in Australia anyway? Doesn't everyone have health coverage?

Offline James1941

  • Member
  • Posts: 29
Re: 5 years and NOT counting.
« Reply #4 on: September 27, 2010, 08:52:36 AM »
Hi James- What other meds are you taking as part of your combo?
Peace,
Billy

Billy,

You do have to ask difficult questions (lol) - I will quote the pharmaceautical label = Emtricitabine 200mg/Tenovir Disoproxil Fumarate 300mg = 1 tablet per day.  There is a shorter/ommercial name, sorry I cannot remember what that name is AND they decided to type the 'testicle' name on this lot.

James

Offline James1941

  • Member
  • Posts: 29
Re: 5 years and NOT counting.
« Reply #5 on: September 27, 2010, 09:13:43 AM »
Hi,

I have an interest in this matter and notice there was a presentation at the Vienna conference with mixed results (if my memory is correct, once-daily was not as efficient as twice-daily, but was as efficient on patient  who had no resistance to some PIs, or something like that...)

Looking forward to see the results of the trial and thanks for helping science move forward for the benefit of us all.

I tried to enroll into a trial here (involving Raltegravir) but was not selected

Cheers

Eric

Eric,

This trial, as I think I said in my original post, is to see whether Raltigravir is as effective in a once a day as it is in a twice a day routine. The study is just over 1 year into a 2 year trial so we still don't know what the result will be.  The Vienna Conference may have been about a different drug???

As for thanks for helping science to move us all forward - not sure that I am entitled to unqualified thanks.  First: I enrolled in the trial for 3 reasons; first, I get the drugs free for up to 2 years (saves me a lot of $A which I can spend on my other passion =  WINE!!!!   Second:  I enrolled in the trial because I had a feeling that my health just might be monitored a little bit more closely than if I was prescribed a "normal" drug = 2 selfish reasons.  Third rason (which may have been my primary motivator) was to help move science along.  James






Offline James1941

  • Member
  • Posts: 29
Re: 5 years and NOT counting.
« Reply #6 on: September 27, 2010, 09:55:53 AM »
That's great news. I'm also on Raltegravir (with Truvada) and doing well,  it's a good combo.

I was wondering about what you said above, aren't the meds free (or very inexpensive) in Australia anyway? Doesn't everyone have health coverage?

Billy asked what other drug I was on and I could only tell him what was printed on "Label 3" = the testicle names but I THINK that the commercial name is Trudava.

Cost of meds in Australia = NOT free for anyone (unless you can get a charitable organisation to supply (pay for) you. Reality means that if you are employed then you pay the full price for any meds a doctor prescribes and you elect to 'buy'.  However, if you are on social welfare then you are entitled to get meds under the Pharmaceutical Benefits Scheme (PBS).

Social welfare = pensioners = old farts like me! Unemployed/ single mother and a couple of other categories including disability, and HIV is classified as a disability.  If you are en tittled to meds under the PBS then you pay $A5.40/5.45 per prescription.  BUT a prescription = 1 month's supply of 1 med.  To give an example - someone may also need vitamin D, if a doctor prescribes 1 vitamin D tab per day then you get 30 tabs for $A5.45  BUT if the doctor prescribes 3 tabs per day then you get 90 tabs for the same price = $A 5.45.

What that verbale diarrhea means is:  2 meds = $A10.90/month  BUT, I am on a clinical trial = the drug company supplies me for free = I have $10.90/month for WINE = bloody beaut mate.

James
« Last Edit: September 27, 2010, 10:00:20 AM by James1941 »

Offline Inchlingblue

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Re: 5 years and NOT counting.
« Reply #7 on: September 30, 2010, 01:35:26 PM »
Thanks for the explanation, I was under the impression that Australia had a similar system to the British NHS and that all its citizens received health care coverage under such.

 


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