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Author Topic: When to start meds?  (Read 2371 times)

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Offline odyssey

  • Member
  • Posts: 767
  • One Crazy Mofo!
When to start meds?
« on: June 23, 2010, 04:05:15 PM »
So, I recently got a copy of the latest CDC guidelines, from the end of 2009, and they've revised them to recommend HAART for people with CD4 counts between 350 and 500 as well. My CD4 has been in the 400s for quite awhile now. I tried meds awhile ago, but had some awful side effects and stopped. So, I'm wondering if I should look into going back on meds and work on finding a different combo that won't mess me up so badly.

For people who were diagnosed relatively early, did you wait for your CD4 to drop before you started meds, if so, to what? Or did you start meds sooner, if so, at what CD4? How have the meds affected your counts? I'm just trying to get some idea how things have been working for different people. Any advice would be appreciated!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Hellraiser

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  • Posts: 4,136
  • Semi-misanthropic
Re: When to start meds?
« Reply #1 on: June 23, 2010, 08:04:19 PM »
Just out of curiosity what's your viral load looking like?

Offline odyssey

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  • One Crazy Mofo!
Re: When to start meds?
« Reply #2 on: June 23, 2010, 08:31:28 PM »
Before I started meds, it was up in the 60 to 90k most of the time. When I went on meds, I went to UD within a few weeks. After I stopped the meds, I've only had one set of labs, which was pretty soon after I stopped, and my VL was only a few thousand. I go back for my next set of labs in a few weeks. I guess I'll know more then.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline WillyWump

  • Member
  • Posts: 7,198
  • Fall is in the air!
Re: When to start meds?
« Reply #3 on: June 23, 2010, 09:01:17 PM »
Hey "Boston Buddy"!,

How long have you been off meds? What was the REgimine that gave you so much trouble?

I started in the low 300's with ATrip and then Prez/Nor/Tru and my Numbers bounced back superbly. In my opinion, you should be preparing to start again based on your CD4, however your VL count will prob be the deciding factor.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline odyssey

  • Member
  • Posts: 767
  • One Crazy Mofo!
Re: When to start meds?
« Reply #4 on: June 23, 2010, 11:13:48 PM »
Hey roomie :D

I started Truvada/Reyetaz/Norvir in October of 2009 and stopped it on 03/23/2010. It made gave me horrible psychomotor retardation (i.e. wicked slow thinking, movement, etc.), horrible joint pains, and made me wicked depressed. Not good at all. Everyone I knew was really worried about me because I seemed so incredibly sedated. The doc said he'd never seen a reaction like that before, but after I stopped and he saw that it went away, was glad to see I was better. I just wish I knew which of those three drugs did it, so I knew what to avoid and what was okay to use again!

Odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: When to start meds?
« Reply #5 on: June 23, 2010, 11:35:53 PM »
I just wish I knew which of those three drugs did it, so I knew what to avoid and what was okay to use again!
Consider the truvada. The emtriva has sides of dizziness, sleeping problems, and abnormal dreams.

I suffered through months of Sustiva nightmares and dealt with weeks of Chantix "vivid" dreams. When I switched to Truvada back in March for about a month I dealt with a lot of insomnia. I had the vivid chantix-like dreams again (and still do most nights 3 months later), and a dizziness that made me feel like I was high every afternoon for about 2-3 hours just before my next daily dose. (that was fun; but I quit driving in the afternoons because my motor and mental skills were enough degradated)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline odyssey

  • Member
  • Posts: 767
  • One Crazy Mofo!
Re: When to start meds?
« Reply #6 on: June 23, 2010, 11:46:45 PM »
Thanks for the input leatherman! Yeah, its no fun feeling mentally funky. I'm hoping I can find a combo that won't add to my mental issues. I have enough trouble keeping myself happy and non-anxious without taking drugs that'll screw that whole balance up.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline odyssey

  • Member
  • Posts: 767
  • One Crazy Mofo!
Re: When to start meds?
« Reply #7 on: June 23, 2010, 11:59:00 PM »
Just a follow-up on what you said leatherman, I was just looking at the full prescribing info for Truvada on Gilead's website, and all three of my symptoms (fatigue, depression, and joint pain) were listed as side effects. D'oh. I sure wish my doctor had the sense to look at that when I'd first told him instead of just messing around for five months while I was in misery.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: When to start meds?
« Reply #8 on: June 24, 2010, 12:21:13 AM »
of just messing around for five months while I was in misery.
I'm a firm believer in telling people to try to tough it out for several weeks before giving up a med. Many side effects happen within the first couple of weeks, so I think you've got to try to hold out a bit longer (especially if the side effects are lessening) just in case it takes you longer. However when you reach a month's time and nothing is geting better, well then... it's time to move on. ;)

I was stuck on the Sustiva for 9 months because there were no other meds on the market that I could take and that I wasn't resistant to. (that was like 1998 or something) Thankfully there are a lot of combos today that you can try - although I'm hearing that in the future there will be fewer options as meds are being dropped from development.

I sure hope you find a better combo (with NO side effects ;)) when you start up again
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline mecch

  • Member
  • Posts: 11,925
  • red pill? or blue pill?
Re: When to start meds?
« Reply #9 on: June 24, 2010, 02:52:37 AM »
1)   So, I recently got a copy of the latest CDC guidelines, from the end of 2009, and they've revised them to recommend HAART for people with CD4 counts between 350 and 500 as well. My CD4 has been in the 400s for quite awhile now. I tried meds awhile ago, but had some awful side effects and stopped. So, I'm wondering if I should look into going back on meds and work on finding a different combo that won't mess me up so badly.

2)  For people who were diagnosed relatively early, did you wait for your CD4 to drop before you started meds, if so, to what? Or did you start meds sooner, if so, at what CD4? How have the meds affected your counts? I'm just trying to get some idea how things have been working for different people. Any advice would be appreciated!

My take:  

1) If you tried HAART and stopped for side effects, it seems to me stopping was mistake. You should have been cycled through different combos until you found the one that had the least side effects. Some people feel like they have the choice of going on and off but I believe the basic medical opinion these days is, once you start, you currently should really not plan on stopping.  So yes, you should find a combo that doesn't mess you up!

2) I was diagnosed in seroconversion and you can see the labs in my tagline.  My personal opinion is that a person should start HAART when two conditions are met.  1) A trusted specialist tells you that its time.  2) You are in a position to stick to it (emotionally, financially, etc.).  

I don't think its rocket science at least from the patient perspective.  It may be rocket science from the medical perspective but that's the reason "treatment recommendations" are based on thousands of MD observations and experiences and a whole community of researchers, etc...  

I personally don't trust radical doctors who habitually don't follow their profession's establish good protocol.  And I think some people are overly narcissistic (and this is not a critique of the OP!) and give themselves too much credit and power, to their own detriment, getting involved in stuff that professionals have a better handle on.  For example, if you know nothing about plumbing and your pipes are bursting, you call an expert plumber and take his/her expert advice and services.

To the OP - I think the medical establishment is behind you starting HAART now so if you can steel yourself for it, I think you will have a good experience and many benefits.
« Last Edit: June 24, 2010, 03:03:44 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline hotpuppy

  • Member
  • Posts: 555
Re: When to start meds?
« Reply #10 on: June 24, 2010, 06:45:16 AM »
Hey Odyssey,
  I think as you know, drugs affect different people in different ways.  It's great that you stuck it out for a little while, and like others said, sometimes your body adjusts and the side effects go away.

  Reyataz isn't exactly my favorite drug, but if you tolerated it well it works.  It's easy enough to swap out the Truvada.  I'm not a doc, so I'll leave the med choices to you and your doc.

  I had to stop taking meds last November due to liver toxicity.  My numbers are similar to yours with a lower viral load (30K).  Right now I'm working on slowly losing weight so that my liver will shed some fat that has accumulated there and then I can start meds.  My doc and I decided that it was more important to reduce my liver numbers than to be on HIV meds which stress the liver.  Treating HIV is a balancing act so don't get frustrated if your balance is a little different from that of others.  Some people have virtually no side effects and others of us get them all.
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline odyssey

  • Member
  • Posts: 767
  • One Crazy Mofo!
Re: When to start meds?
« Reply #11 on: June 26, 2010, 12:02:16 AM »
Jeez, I hope I'm not narcissistic. I certainly don't think myself all knowing or anything. I just try to make informed decisions by learning about my condition and getting different opinions to consider. I think worshiping a single doctor like they are a god is potentially dangerous, because doctors are human just like the rest of us. That's why I read studies, guidelines, articles, verifiable websites, etc. as well as come and see what other doctors have told fellow patients. I don't think that makes me narcissistic, I think that makes me an educated patient.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline mecch

  • Member
  • Posts: 11,925
  • red pill? or blue pill?
Re: When to start meds?
« Reply #12 on: June 26, 2010, 04:12:48 AM »
"And I think some people are overly narcissistic (and this is not a critique of the OP!) "

Odyssey, I specifically said I don't think you are. I was addressing a general readership, because there are people who take on too much.  Many people read a thread, not just the OP:

So hope you did not take personal offense.

Being educated is good. Making decisions based on recommendations of trusted doctor is good.

"My personal opinion is that a person should start HAART when two conditions are met.  1) A trusted specialist tells you that its time.  2) You are in a position to stick to it (emotionally, financially, etc.)."

“From each, according to his ability; to each, according to his need” 1875 K Marx

Online bocker3

  • Member
  • Posts: 3,417
  • You gotta enjoy life......
Re: When to start meds?
« Reply #13 on: June 26, 2010, 12:51:16 PM »

I personally don't trust radical doctors who habitually don't follow their profession's establish good protocol.  And I think some people are overly narcissistic (and this is not a critique of the OP!) and give themselves too much credit and power, to their own detriment, getting involved in stuff that professionals have a better handle on.  For example, if you know nothing about plumbing and your pipes are bursting, you call an expert plumber and take his/her expert advice and services.

You seem to have given yourself a bit power here -- to the possible detriment of others.

Not following an established protocol for a specific patient does not make a doctor radical -- it makes him/her smart.  Medicine is not a one size fits all -- what works for you or me, may not be right for someone else.  The human body is not a set of pipes in a house -- there is much nuance and differences between people.  So get off your high horse and stop berating the OP (your statements that you aren't directing them at him are falling on deaf ears here -- it's his post and no one else has said anything related to your admonishments).

Odyssey -- you need to insure that you are comfortable with your doc, with his/her recommendations and with whatever YOU ultimately decide.  You can get a lot of good opinions and advice on here, but ultimately you, with your doctor, need to decide.  Personally, I would opt for sooner over later -- but I know you have other things in your life that you have to take into consideration, so my choice may or may not work for you. 

Good luck --

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline BJS2011

  • Member
  • Posts: 62
Re: When to start meds?
« Reply #14 on: April 17, 2011, 07:13:16 AM »
So, I recently got a copy of the latest CDC guidelines, from the end of 2009, and they've revised them to recommend HAART for people with CD4 counts between 350 and 500 as well. My CD4 has been in the 400s for quite awhile now. I tried meds awhile ago, but had some awful side effects and stopped. So, I'm wondering if I should look into going back on meds and work on finding a different combo that won't mess me up so badly.

For people who were diagnosed relatively early, did you wait for your CD4 to drop before you started meds, if so, to what? Or did you start meds sooner, if so, at what CD4? How have the meds affected your counts? I'm just trying to get some idea how things have been working for different people. Any advice would be appreciated!
I tested poz within months of being infected. I didn't start meds for 5 yrs when my CD4s dropped below 300. I was also feeling horrible. No energy, sick to tummy etc. I went through 3 months of hell on my meds at first. But I fought and stuck it out. Now my C4s are in the thousands and viral undetectable. I put on 20 pounds which I desperately needed. So just be ill for the first while knowing you will only get better once your body adjusts to the meds. Good luck.!!

 


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