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Author Topic: New Diagnosis - New Drugs- Help is needed to understand all this  (Read 3655 times)

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Offline todd123

  • Member
  • Posts: 67
  • "You don't ask, you don't know."

Posts: 2



   
New Diagnosis - New Drugs- Help is needed to understand all this
Reply #17 on: Today at 02:17:12 pm
 
Hello everyone, my name is Scott and this week I got ALL the news.  Showed up to my doc with a case of molluscum contagiosum
and stomach problems.  My doctor, who is amazing and knows quite a bit about HIV, said this was probably a sign of AIDS.
After testing, the numbers came back very dangerous: CD4 at 16 and let's just say astronomically high viral load.
After consulting with 2 other HIV specialists, he decided that I had to go on a drug regimen NOW.  He didn't have time to wait
for the genetic test.  So, to be cautious, he put me on the newest drugs prezista/isentress/intelence because they were good with
resistance.  I'm also on Mepron (bactrim allergy) to protect against PCP. 

Well that's my story.  I'm so much worried yet about being sick as I am about all the work and understanding this is going to take.
I have a support network and a great, loving partner.  (He tested neg yesterday)  Any thoughts, advice and good wishes would be
greatly appreciated. 

Thanks so much
Tested HIV+ July 28, 2008
CD4 16 VL over 400,000
Started Prezista/Norvir, Isentress and Intelence; Mepron
8/08   CD4 64    2%      VL 1500
9/08   CD4 135  6%      VL 371
11/08 CD4 104   9%     VL 156
12/08 CD4 161   9%     VL 400
01/09 CD4 109   7%     VL 351
02/09 CD4 218   8%     VL   98
03/09 CD4   80   5%     VL   98 at least that's the same
04/09 CD4 150   7%      VL 100
05/09 CD4 232   8%      VL   90

Offline Surviving

  • Member
  • Posts: 20
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #1 on: August 03, 2008, 03:15:53 PM »
i haven't done much research on this, but perhaps you partner should also go on a regimen.

i recall a while back that if people who are not infected took the meds too, they could prevent becoming infected. 

just a thought and something to consider.


i recall when my cd4 was 2 and my internal as well as my external worlds came down crashing and with no one to help me.

perhaps a day will come when i will know why i was spared. 

for now i am just surviving and maybe i will learn to live again.

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #2 on: August 03, 2008, 11:37:27 PM »
Hello and welcome.  The meds work, just give them a little time.  It sounds like you're getting the help you need.

I have no advice, only good wishes and one thought; is this regimen permanent, or only until you get the results of a genotype test?
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline todd123

  • Member
  • Posts: 67
  • "You don't ask, you don't know."
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #3 on: August 04, 2008, 12:08:00 AM »
To be honest, I'm not sure if this is going to be a regular regiment.
My doc mentioned that when my CD4 goes up, he will be taking me off the Prezista I think.

Thank you for responding. 
Tested HIV+ July 28, 2008
CD4 16 VL over 400,000
Started Prezista/Norvir, Isentress and Intelence; Mepron
8/08   CD4 64    2%      VL 1500
9/08   CD4 135  6%      VL 371
11/08 CD4 104   9%     VL 156
12/08 CD4 161   9%     VL 400
01/09 CD4 109   7%     VL 351
02/09 CD4 218   8%     VL   98
03/09 CD4   80   5%     VL   98 at least that's the same
04/09 CD4 150   7%      VL 100
05/09 CD4 232   8%      VL   90

Offline RapidRod

  • Member
  • Posts: 15,286
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #4 on: August 04, 2008, 05:49:33 AM »
http://www.fda.gov/medwAtch/safety/2008/safety08.htm#Prezista

Prezista (darunavir)

Audience: Infectious disease healthcare professionals
[UPDATE 3/21/2008] FDA issued a new "Information for Healthcare Professionals" sheet highlighting the addition of hepatotoxicity information to the WARNINGS section of prescribing information for Prezista.

[Posted 03/12/2008] FDA and Tibotec Therapeutics notified healthcare professionals of changes to the WARNINGS section of the prescribing information for Prezista (darunavir) tablets regarding the risk of hepatotoxicity. In clinical trials and postmarketing experience, drug induced hepatitis has been reported in patients receiving combination therapy with Prezista/ritonavir. Appropriate laboratory testing should be conducted prior to initiating therapy with Prezista/ritonavir and patients should be monitored during treatment. Increased AST/ALT monitoring should be considered in patients with underlying chronic hepatitis, cirrhosis, or in patients who have pretreatment elevations of transaminases, especially during the first several months of Prezista/ritonavir treatment.


Just something you need be aware of todd123.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,912
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #5 on: August 04, 2008, 10:31:15 AM »
Todd123,

Just take a few deep breaths.  There are other people who have had numbers like yours and are still around.  I know there's tons of information you'll be pouring over in the next few days.  Just a word of caution:  don't obsess over everything you read.  Treatments are much improved these days vs. 10-17 years ago.  I had a CD4 count years ago of 4 and I'm still here (and my counts are normal now). 

I think it's great that you have good support and a loving partner.  That's a reason to consider yourself fortunate.  Good luck and I hope to hear more about how you're doing. 
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Winiroo

  • Member
  • Posts: 2,082
  • Positive since 1991
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #6 on: August 04, 2008, 10:57:53 AM »
The following was copied and pasted from my webpage. Welcome to AIDSmeds.

My advice, try to stay in the moment. Don't live in the past or the future. It's tough to do but every time you get there, you get to truly live. Be optimistic. Take charge of your medical care be assertive and get informed in your treatment. Doctors can and do make mistakes.

Celebrate your life. Allow yourself to be silly sometimes, it will lengthen your years and brighten your life. Take care of your body. Eat right, get plenty of rest and eliminate as much stress and drama from your life as possible.

Before HIV was a part of your life you made decisions, faced challenges, and found what was important to you. You will now, too. Even very sick or very burdened people have remarkable spirits, inspiring creativity, the capacity to cope with illness and mortality, and the drive to find meaning in thier lives.

Offline Miss Philicia

  • Member
  • Posts: 24,011
  • celebrity poster, faker & poser
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #7 on: August 04, 2008, 11:03:29 AM »
i haven't done much research on this, but perhaps you partner should also go on a regimen.

i recall a while back that if people who are not infected took the meds too, they could prevent becoming infected. 

huh?
"Ive slept with enough men to know that Im not gay"

Offline Winiroo

  • Member
  • Posts: 2,082
  • Positive since 1991
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #8 on: August 04, 2008, 11:43:12 AM »
I missed that tid bit.


Offline Prestige

  • Member
  • Posts: 8
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #9 on: August 05, 2008, 03:58:44 PM »
Hello, my CD4 have increased since the drugs and the virus load dicreased, so be positive, we all are anyway... read also the following
take care

Many patients taking HIV drugs can now expect to live into their 70s  

Michael Carter, Friday, July 25, 2008

A large international study has provided evidence that people taking HIV treatment can now expect to live into their 60s and beyond. The study is published in the July 26th edition of The Lancet, and showed that an individual starting successful HIV treatment aged 20 would be expected to live to be 63, and that a patient initiating an anti-HIV drugs regimen aged 35 could live to the age of 67. It also provided evidence of the dramatic and continued decline in the risk of death amongst people with HIV since effective HIV treatment became available.

What is more, the researchers found that starting treatment with a CD4 cell count above 200 cells/mm3 would mean that a person aged 20 could expect to live to be 70, and that a 35 year-old could survive into their 72nd year.

They also noted significant improvements in the prognosis for HIV-positive patients in the ten years of the study. Overall, a 20 year-old starting HIV treatment between 1996 and 2005 would be expected to live another 43 years. Between 1996 and 1999, they calculated that such a patient would live to be 56 years old, but in the period 2002 to 2005 this had improved to a little under 70 years.

There were also impressive improvements in the prognosis of 35 year-olds starting treatment, with an expectation of a further 32 years in life after HIV therapy was initiated. But, once more, prognosis improved over time from an expectation of a further 25 years of life in 1996 99, to 32 years by 2002- 05.

Furthermore a 20 year-old starting treatment with a CD4 cell count below 100 cells/mm3 would have a life-expectancy of 54 years compared to a life-expectancy of 70 years for a 20 year-old starting treatment with a CD4 cell count above 200 cells/mm3. The importance of CD4 cell count at the time of therapy initiation to prognosis was also seen in 35 year-olds, with patients with a CD4 cell count below 100 cells/mm3 expected to live until they were 62 compared to a prognosis of 72 years for patients with a CD4 cell count above 200 cells/mm3.

Reference
The Antiretroviral Cohort Collaboration. Life expectancy of individuals on combination therapy in high-income countries: a collaborative analysis of 14 cohort studies. The Lancet 372: 293 299, 2008.
Cooper DA. Life and death in the cART era. The Lancet 372: 266 267, 2008

Offline wow1969

  • Member
  • Posts: 208
Re: New Diagnosis - New Drugs- Help is needed to understand all this
« Reply #10 on: August 05, 2008, 07:35:58 PM »
That is awesome information ... Thanks for sharing

 


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