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Author Topic: Starting VRX496  (Read 45423 times)

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Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #100 on: June 26, 2007, 05:25:30 PM »
Selenium I am taking.  Multi Vitamin I am not. 
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline NYCguy

  • Member
  • Posts: 180
Re: Starting VRX496
« Reply #101 on: June 27, 2007, 02:53:38 PM »
you might try adding a multi - just a normal one from the drug store is fine.  I do also know one guy in my group who thinks selenium helped his t-cells quite a bit.  I try to eat 2 brazil nuts every day, since they are hight in selenium.
11/9/06 = #$%^&!
sometime early Dec 2006:
CD4 530 20%/VL >250,000 (&*$$%!!)
started Reyataz300mg/Norvir/Truvada 12-27-06.
1/30/07 CD4 540 30%/VL <400
4/07 CD4 600+ 33%/VL <50
6/9/07 CD4 720 37%/VL <50
10/15/07 CD4 891 (!) %? VL <50
1/2010 CD4 599 (37%) VL<50 (drop due to acute HCV)
9/2010 - looks like HCV is gone for good! And I'm finally drinking again, thank GOD
2013 - considering a switch to Stribild. but I love my Kidneys (but I hate farting all the time!)...
June 2013 - switched to Stribild.  so far so good...

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #102 on: June 27, 2007, 04:21:27 PM »
Ok here goes.  I talked to my Doctor today.  We are adding AZT to my Atripla.  Since we cannot get the Viral Load where we want it we are trying squash it early.  In 4 weeks we will try another attempt at the VRX496 Study.
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #103 on: July 21, 2007, 11:57:40 PM »
So I am soon coming up on one month of being on the AZT with my Atripla.  I just had blood work done this past week so I am waiting to see what we come up with.  If this blood work looks good then I am going to attempt entering the VRX496 study again.  Things that are stressing me out this go round like how in the world I am going to fit this into my crazy schedule with work.  I am so busy at work and I have 2 certifications to renew and 1 new one I am getting.  I am trying to not stress out and go with the flow since I want to do this study so bad.  So I will post the test results soon as I get them and then give the information on entering the study again.
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline Jake72

  • Member
  • Posts: 145
Re: Starting VRX496
« Reply #104 on: July 22, 2007, 12:21:23 AM »
Hey Appleboy,

Thanks for the update!  Don't stress out about the trial, your results, or work.  Just take deep breaths and deal with one thing at a time.  As always, we are behind you 100%!


Offline J220

  • Member
  • Posts: 587
Re: Starting VRX496
« Reply #105 on: July 22, 2007, 10:52:27 AM »
We are rooting for you all the way. Hopefully your labs will let you enter the trial. As far as things as things at work, well sometimes things just fall into place with time. Like Jake said, one day at a time! Cheers, J.
"Hope is my philosophy
Just needs days in which to be
Love of Life means hope for me
Born on a New Day" - John David

Offline NYCguy

  • Member
  • Posts: 180
Re: Starting VRX496
« Reply #106 on: July 23, 2007, 02:11:42 PM »
No matter what happens, just take care of yourself and do what you have to do.  You have all of our support.
Go Appleboy!
11/9/06 = #$%^&!
sometime early Dec 2006:
CD4 530 20%/VL >250,000 (&*$$%!!)
started Reyataz300mg/Norvir/Truvada 12-27-06.
1/30/07 CD4 540 30%/VL <400
4/07 CD4 600+ 33%/VL <50
6/9/07 CD4 720 37%/VL <50
10/15/07 CD4 891 (!) %? VL <50
1/2010 CD4 599 (37%) VL<50 (drop due to acute HCV)
9/2010 - looks like HCV is gone for good! And I'm finally drinking again, thank GOD
2013 - considering a switch to Stribild. but I love my Kidneys (but I hate farting all the time!)...
June 2013 - switched to Stribild.  so far so good...

Offline SASA39

  • Member
  • Posts: 690
Re: Starting VRX496
« Reply #107 on: July 23, 2007, 04:34:45 PM »
I`m not behind you ,but I`m at your side  100 %  ;D
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #108 on: July 23, 2007, 07:34:00 PM »
Thank you all!
 :-*
Bill
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline JamieD

  • Member
  • Posts: 259
Re: Starting VRX496
« Reply #109 on: July 27, 2007, 04:34:49 PM »
I applaud your courage, appleboy. I don't think I could do a rectal biopsy.  :-\ And like redhotmusclebear said, I don't think could let someone mess with my t-cells unless it was extremely likely that it would produce great benefits to me. I would really have to know a lot more about the study in order to be in it, but people like you are what is going to give us more knowledge.
I am not really hopeful for a cure, but I am hopeful for things like this that will allow people to be off of medication for years at a time, thus saving money and giving the body time to recover from some of the damage that HAART does to it.

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #110 on: July 29, 2007, 05:35:51 PM »
Thank you Jamie,
I have spent lots of time looking at this study and I feel confident that something is to be learned from it therefore helping all mankind.  Yes the rectal biopsy does not thrill me but it will be the most action it has seen in years!  Ok not the kind of action I want but what can you do but try to make fun of it?  I am hoping to visit the trial nurse during my normal ID doctor on Wednesday.  So soon I hope to have more news and continue giving information on this study.
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #111 on: August 01, 2007, 05:16:26 PM »
I got my VL back and it is 70 which is undetectable (<75).  I checked with the intake coordinator and she cannot do an intake till after September 10th.  So looks like another try in September!
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline J220

  • Member
  • Posts: 587
Re: Starting VRX496
« Reply #112 on: August 01, 2007, 06:09:25 PM »
Way to go, Appleboy....look like you'll be joining this trial! We all look forward to hearing your great results. J.
"Hope is my philosophy
Just needs days in which to be
Love of Life means hope for me
Born on a New Day" - John David

Offline Jake72

  • Member
  • Posts: 145
Re: Starting VRX496
« Reply #113 on: August 01, 2007, 07:10:50 PM »
Hey, great!!!  Congratulations on the super results, Appleboy!  Now go out and celebrate!

Offline NYCguy

  • Member
  • Posts: 180
Re: Starting VRX496
« Reply #114 on: August 02, 2007, 05:05:30 PM »
Super-congrats from me as well!  September's just a heartbeat away and you'll probably have an even lower VL then.  Do some celebrating and enjoy the rest of summer!
11/9/06 = #$%^&!
sometime early Dec 2006:
CD4 530 20%/VL >250,000 (&*$$%!!)
started Reyataz300mg/Norvir/Truvada 12-27-06.
1/30/07 CD4 540 30%/VL <400
4/07 CD4 600+ 33%/VL <50
6/9/07 CD4 720 37%/VL <50
10/15/07 CD4 891 (!) %? VL <50
1/2010 CD4 599 (37%) VL<50 (drop due to acute HCV)
9/2010 - looks like HCV is gone for good! And I'm finally drinking again, thank GOD
2013 - considering a switch to Stribild. but I love my Kidneys (but I hate farting all the time!)...
June 2013 - switched to Stribild.  so far so good...

Offline FiercenBed

  • Member
  • Posts: 183
Re: Starting VRX496
« Reply #115 on: August 02, 2007, 06:16:25 PM »
sorry about the trouble w/ Virxsys apple. just catching up on post. like i said on a previous post i went to ny for the >5,000 vl study. i got bumped for an 'undiagnosed' case of ks. got the denial news on friday and sat on the couch & cried all day Saturday.....oh well.

anyway....they should be on phase three by now right? which would be a good thing for you. phase three was a pretty broad study with a lot of participants. one thing to keep in mind that i havnt seen in other post is the 'genetic junk' draw back.

once you do a genetic study ur considered 'genetic junk' <nice medical term huh>. if u do any genetic testing it makes u ineligible for any other type of genetic studies or programs. and there are several other studies in phase two. so make sure this is the one you wanna go with. the virxsys coordinator wouldnt give any guarantee of future treatment with the program if needed. there were questions about the legnth the treatment would last.

my doc sez stress affects vl so de-stress. easier said then done right?

that less <50 is a bitch:) good luck!
« Last Edit: August 02, 2007, 06:20:59 PM by FiercenBed »

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #116 on: August 02, 2007, 10:08:17 PM »
Oh stress lovely stress!  My Lexapro helps with that some but I still have it.  Genetic junk never heard of this term.  The study I am looking at is phase 2 and that is currently the only phase that I know of with this.  I still feel strongly this is what I need to do so I am sticking to my guns.  I am sorry to hear about your KS and not being able to enter the study.  At least you found out about the KS instead of not knowing so I would say that is good you gave it shot. 

If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline J220

  • Member
  • Posts: 587
Re: Starting VRX496
« Reply #117 on: September 17, 2007, 10:53:10 PM »
Any news Appleboy?? Keep us posted!
"Hope is my philosophy
Just needs days in which to be
Love of Life means hope for me
Born on a New Day" - John David

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #118 on: October 09, 2007, 07:02:26 PM »
Well I have some bad news!  I had an appointment for another intake for the VRX496 study at UPenn in November.  I found out today that they changed the study around and that they are only accepting people with a CD4 nadir of no less than 250.  Nadir is the lowest CD4 count a person has ever had.  I have been as low as 168.  Since that is way below 250 I am now totally out of the study.  Here is what I found out.  Those with a nadir below 250 when pulled off meds in the study tend to have CD4s drop low again require the patient to be put back on meds.  So that right there sheds some light on this study a bit.  So right now it seems that study only seems to working of a person never has has a CD4 of less than 250.  I am not in the least disappointed that they found this out before me starting the trial.  I would have hated to gone through the complex procedures to only find out that it was not going to work.  I am glad that my VL is now below 48 and my CD4s are at 673.  So with that I did hit a goal of getting my VL down and and CD4s up.  With that I am closing this chapter of my life and I am proud of at least trying to get in this study.  I am more than grateful for the support from everyone here in the forums.  Without that push from everyone I don't think I would have ever had the balls to give this a shot.  THANK YOU ALL from the bottom of my heart!  :-*
Bill
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline FiercenBed

  • Member
  • Posts: 183
Re: Starting VRX496
« Reply #119 on: October 09, 2007, 07:24:45 PM »
dude.....bad info....sorry  to hear this! i had mentionedi had gone through the whole VRX496 intake process in NY only to be bumped for having a 'possible' case of KS. it was like a roller coaster ride that flew off the tracks. god dam i was depressed so i kinda know how u feel.
im starting to have doubts about the VRX496 ability to treat HIV on a wide scale basis. they seem to be 'cherry picking' to get the best results, but i guess thats what clinical trials are for.
i do look at the whole experience as a major learning experience that bought my expectations back to reality. but hold tight therez gota b something else in the magical medical box!

good luck.

Offline J220

  • Member
  • Posts: 587
Re: Starting VRX496
« Reply #120 on: October 09, 2007, 07:43:00 PM »
Well I have some bad news!  I had an appointment for another intake for the VRX496 study at UPenn in November.  I found out today that they changed the study around and that they are only accepting people with a CD4 nadir of no less than 250.  Nadir is the lowest CD4 count a person has ever had.  I have been as low as 168.  Since that is way below 250 I am now totally out of the study.  Here is what I found out.  Those with a nadir below 250 when pulled off meds in the study tend to have CD4s drop low again require the patient to be put back on meds.  So that right there sheds some light on this study a bit.  So right now it seems that study only seems to working of a person never has has a CD4 of less than 250.  I am not in the least disappointed that they found this out before me starting the trial.  I would have hated to gone through the complex procedures to only find out that it was not going to work.  I am glad that my VL is now below 48 and my CD4s are at 673.  So with that I did hit a goal of getting my VL down and and CD4s up.  With that I am closing this chapter of my life and I am proud of at least trying to get in this study.  I am more than grateful for the support from everyone here in the forums.  Without that push from everyone I don't think I would have ever had the balls to give this a shot.  THANK YOU ALL from the bottom of my heart!  :-*
Bill

Bummer...but hey like you said, at least you tried.

Now, about the trial, did they actually say that this therapy works only on people that have always been above 250? It's possble that the problem is that there is a time lag before the modified cells "kick in" as it were, but that due to safety parameters they can't have volunteers get below a certain threshold after being taken off meds, and thus they are required to re-start meds if that happens. Possible? As far as cherry picking for best results, I can't believe that's the case (but what the hell do I know), I do believe it's just a function of the specific parameters of the patient population they are targeting for the particular phase. Just a thought, or rather, a hope, that this is the case, and that this does work. Cheers J.
"Hope is my philosophy
Just needs days in which to be
Love of Life means hope for me
Born on a New Day" - John David

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #121 on: October 09, 2007, 08:13:32 PM »
Bummer...but hey like you said, at least you tried.

Now, about the trial, did they actually say that this therapy works only on people that have always been above 250? It's possble that the problem is that there is a time lag before the modified cells "kick in" as it were, but that due to safety parameters they can't have volunteers get below a certain threshold after being taken off meds, and thus they are required to re-start meds if that happens. Possible? As far as cherry picking for best results, I can't believe that's the case (but what the hell do I know), I do believe it's just a function of the specific parameters of the patient population they are targeting for the particular phase. Just a thought, or rather, a hope, that this is the case, and that this does work. Cheers J.

Well I am assuming that the problem is with a possible lag time meaning people drop below a certain threshold.  If that is the case I can understand totally that it might not be a good idea.  Cherry picking I seriously doubt.  They know from previous patients what is working and what is not and for that I again understand.  They are keeping people safe and that is priority one for any trial.
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline FiercenBed

  • Member
  • Posts: 183
Re: Starting VRX496
« Reply #122 on: October 10, 2007, 09:03:54 AM »
well mayb 'cherry picking' is too strong a word. i am using this word with regards to a successful outcome aka fda approval to the study. im a pessimist when it comes to pharma and hope this is about safety  .......but:

1) alot of people have or have had cd4 counts below 250.
2) alot of people are not 'undetectable' even with haart.
3) alot of people have an oi like ks.

you said yourself they are 'changing the study'. this 250 number was never mentioned in my interview and i was under 200 when diagnosed. obviously some new negative data came to the fore front to cause this exclusion. i would be curious to hear the specifics. i have never heard of changing a study parameter in the middle of research but i guess it is done. im sure this new exclusion was not done lightly. it just seems like they are trying to eliminate any possibility of any type of negative outcome.  this is really going to exclude alot of people from possible treatment.

on the bright side this may induce people to get tested sooner before they drop below 250.

Offline bimazek

  • Member
  • Posts: 781
Re: Starting VRX496
« Reply #123 on: November 25, 2007, 03:01:35 AM »
any one have any news on this one???

Offline SASA39

  • Member
  • Posts: 690
Re: Starting VRX496
« Reply #124 on: November 26, 2007, 01:56:29 PM »
No , thank YOU , buddy !
  THANK YOU ALL from the bottom of my heart!  :-*
Bill
« Last Edit: November 26, 2007, 02:08:45 PM by SASA39 »
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline ZCorker

  • Member
  • Posts: 48
Re: Starting VRX496
« Reply #125 on: January 04, 2008, 09:14:49 PM »
I participated in this trial about a year ago, but didn't get anywhere.  I had two plasma pharesis and the study site decided not to infuse me because they couldn't prove to the FDA that there would any benefit.  I guess in vitro the cell count went down, but I will never know as to whether or not this was because there was no active agent to kill the virus in vitro or whether the treatment didn't work.  Previously I was advised that many of the patients cell counts went down and it took a long time for the cell counts to come back up.


Offline J.R.E.

  • Member
  • Posts: 7,114
  • Joined Dec-2003 Living positive, since 1985.
Re: Starting VRX496
« Reply #126 on: January 04, 2008, 11:37:21 PM »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Starting VRX496
« Reply #127 on: January 20, 2008, 07:27:49 AM »
I am alive and well!  Just been super busy!  I just celebrated my 30th B-day which means I am now officially old!  I am super excited to drop into the forums and see that my post is still towards the top of the list!  Makes me feel kinda special  ;D 
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline flip408

  • Member
  • Posts: 21
Re: Starting VRX496
« Reply #128 on: January 21, 2008, 05:56:03 AM »
Isn't 30 now the new 20, I thought 50 was the new 40. 

"You're still a young man baaby,"  does anyone else remember Pablo Cruise?
Start where you are, use what you have, do what you can.    A Ashe
05/14/11  501  <50  20%
4/14/11  483  <50  19%
2/10/11    523  <50 18% start Rilpivr/trvda
11/15/10  470  <50
1/6/10    430  <50  16%
7/13/09  345  <50  12%
1/26/09  347  <50  16%
7/22/08  306  <50  6%
11/26/07 238 <50  8%
6/11/07  253  <50  5%
11/9/06  122  <50 7%
9/05/06  <25 >100000  PCP

 


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