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Author Topic: Should I Start Taking Meds  (Read 3640 times)

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Offline atlantabro

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Should I Start Taking Meds
« on: December 18, 2006, 07:45:21 PM »
Hey folks...I just got my second lab results after being diagnosed back in August. CD4: 342, VL: 31500. Not much of a difference from my first lab results (see: http://forums.poz.com/index.php?topic=4422.msg50281#msg50281).

My doc said it may be a good time to start a regimen. As I mentioned in my first lab results post, I don't know if I'm ready. Part of me feels like I should wait until my next round of blood work (March) and see if there's any change. The other part, feels like I should just start. What scares me are the side effects.

If I were to start therapy, my doc said he would probably put me on a combination of Sustiva, Truvada and Reyataz. I've yet to do my research on those, but I'm curious to find out from other users what, if any side effects they've experienced and how have the drugs helped or suppressed your counts. I'd appreciate any and all details. I'd also love to hear everyone's take on the good vs. the bad in starting meds. I need guidance and advice. Thanks!

Offline SoSadTooBad

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  • Posts: 248
Re: Should I Start Taking Meds
« Reply #1 on: December 18, 2006, 10:26:21 PM »
Bro - I would start - you have the luxury of starting when your counts are good, and your prognosis will be undoubtedly excellent. 

I tested positive and started meds with a t-cell count of 78 - wasn't a great place to start, and I think the future would look a hell of a lot better if I had been on top of things a lot sooner. 

I experience few if any side effects from the meds, and I have seen a great improvement in my counts and my overall health.  Starting where you are will likely provide you with an even better response. 

My vote is start now, and really maximize your opportunity to get your counts back into the normal range.  Best of luck.

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: Should I Start Taking Meds
« Reply #2 on: December 19, 2006, 07:31:56 AM »
My counts are similar.   CD4 408, VL 24,000 at last check.  I go back for round 4 in January.    How long ago were you diagnosed and how many labs have you done?

I wouldn't base my decision on one lab.     I'm not on any meds either and know the anxiety.

I personally don't plan to wait until I'm sick or have extremely low counts, but I'm not jumping on the drug bandwagon yet because I can't see any reason to.

Everyone seems to have a different opinion and there is no consistent situation I can see. 

I think way too much emphasis is placed on this numbers game and I'm not playing it anymore.    I am basing my decisions more on my own personal health than anything!

« Last Edit: December 19, 2006, 07:33:46 AM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline woodshere

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Re: Should I Start Taking Meds
« Reply #3 on: December 19, 2006, 08:50:25 AM »
I have to concur with what SoSadTooBad said regarding starting earlier rather than when your CD4 count drops below 300.  However, it is ultimately up to you and your doctor.

As far as side effects, they are different for each person.  I started meds in April with Reyataz, Norvir, and Truvada.  The side effects were basically zero, a mild headache for a few days and that was it.  I just spoke with a friend who is now on atripla and has had zero, while others talk about how horrible it is.

Wishing you the best,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline atlantabro

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Re: Should I Start Taking Meds
« Reply #4 on: December 19, 2006, 11:19:39 AM »
This was only my 2nd lab. I have my 3rd in March. I was diagnosed back in August but may have been infected as early as January. I'd hate to wait and see my counts drop, but I also agree with you about the numbers game. I feel great and don't want the meds to affect that, granted it might help increase my counts. Quite honestly, I don't know what to do...


My counts are similar.   CD4 408, VL 24,000 at last check.  I go back for round 4 in January.    How long ago were you diagnosed and how many labs have you done?

I wouldn't base my decision on one lab.     I'm not on any meds either and know the anxiety.

I personally don't plan to wait until I'm sick or have extremely low counts, but I'm not jumping on the drug bandwagon yet because I can't see any reason to.

Everyone seems to have a different opinion and there is no consistent situation I can see. 

I think way too much emphasis is placed on this numbers game and I'm not playing it anymore.    I am basing my decisions more on my own personal health than anything!



Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: Should I Start Taking Meds
« Reply #5 on: December 19, 2006, 01:26:39 PM »
This was only my 2nd lab. I have my 3rd in March. I was diagnosed back in August but may have been infected as early as January. I'd hate to wait and see my counts drop, but I also agree with you about the numbers game. I feel great and don't want the meds to affect that, granted it might help increase my counts. Quite honestly, I don't know what to do...



It sounds very similar to my own situation and the virus has not replicated drastically and your tcells are staying relatively level.   I think I was likely infected in January or February also.   

You know one thing I've found with HIV is that you have to learn to live in ambiguity a lot of the time.   No one has any definite answers.   I have 2 HIV doctors and neither recomended starting meds yet.   Even if my counts drop some in January I don't believe I will start any treatment right off.

One thing it sounds like is that from the sound of your counts it seems like you may have hit what they call a base or set point.  It's hard to say with only 2 labs, but I'm no expert.   I just can't see jumping on meds while I am healthy and having to deal with it any sooner than necessary.

Just a few short years ago, doctors were putting everyone on HIV meds who was diagnosed HIV+.   Now, they come up with these other federal guidelines that put Everyone in the same bracket again.   If your vl and cd4 are < or > then presto that's supposed to be the time to prescribe meds?   

Well, here is a site that I did find helpful which has a toll free hotline you can call to speak to someone about the med situation.    It's called Project Inform and the people answering the phones seem to have a more rational approach to starting meds.    Here is the link to that organizations site:   

http://www.projectinform.org/fs/strat_start.html

Actually, I may post their site as a separate topic cause I know a lot of people would benefit from it.   While they aren't doctors they don't claim to be and I felt they did a good job answering my questions.   It's free as well so worth checking out!

Wesley
« Last Edit: December 19, 2006, 01:31:07 PM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline blondbeauty

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  • Posts: 1,785
Re: Should I Start Taking Meds
« Reply #6 on: December 19, 2006, 04:55:22 PM »
You donīt need  to be on meds. But you must also think if being on meds could bring you peace of mind. If you are going to feel safer after starting meds, you should consider it very seriously. I started meds before needing it physically, but I needed them psychologically.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline AtomicA

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  • that's Famous with an F
Re: Should I Start Taking Meds
« Reply #7 on: December 21, 2006, 03:55:57 AM »
I firmly believe that treatment options we explore today should be considered along with what is likely coming down the pipe in the next decade. Do some research into the whole latent viral pools in resting CD4 cells and various other places in the body and into some of the theory and possible future treatments in those areas. To think that the drugs that we have on the market today will be the same drugs we are taking 10 years from now is unrealistic. 10 years ago protease inhibitors were just coming into existence...

There are some very credible theories out there that suggest the less established the virus is allowed to become in you body (ie, starting HAART earlier) the better chance you may have of one day clearing the virus from you body completely when some of the various new techniques that are being explored come into maturity.

If I had known what I know now back when I was diagnosed in march of 2005, I would have demanded to be put on the ARV's immediately.

I take sustiva and kivexa (abacavir, 3TC), two pills once a day. viral load was undetectable in 6 weeks but my doc didn't want me starting drugs until my CD4 count was down near 200. I went fro ma high of 480 to a low of 218 in less than 6 months but since starting the meds my CD4 count still hasn't broken the 400 mark again. I have since changed doctors because I think the advice I got was irresponsible and possibly did longer term damage that was entirely preventable.

Just remember that there are more things to consider than your next set of labs when making this decision!

PS, the sustiva bit goat chunks at first but now I hardly even notice it. just try not to start it at the beginning of a semester (if you're in school) because if it takes a while to adjust, your marks will definitely suffer at first.
« Last Edit: December 21, 2006, 04:54:48 AM by AtomicA »

Offline newt

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Re: Should I Start Taking Meds
« Reply #8 on: December 21, 2006, 04:06:09 AM »
Mr in Altanta

If you do start you don't need all of Sustiva, Truvada and Reyataz (unless you have some kind of resistance).

The recommended formula for first-line therapy is:

2 nukes (eg Truvada) + EITHER 1 PI (like Reyataz), ideally boosted with a small dose of Norvir OR 1 NNRTI (like Sustiva).

- matt
"The object is to be a well patient, not a good patient"

Offline atlantabro

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Re: Should I Start Taking Meds
« Reply #9 on: December 21, 2006, 10:00:27 AM »
Thanks folks.

I'm leaning more towards starting therapy probably just after the new year. And I stand corrected, the combo my doc wants me to take is Sustiva and Truvada. Can't wait for those vivid dreams! I just hope the side effects aren't as tremendous as I've heard.

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: Should I Start Taking Meds
« Reply #10 on: December 21, 2006, 12:11:42 PM »
I firmly believe that treatment options we explore today should be considered along with what is likely coming down the pipe in the next decade. Do some research into the whole latent viral pools in resting CD4 cells and various other places in the body and into some of the theory and possible future treatments in those areas. To think that the drugs that we have on the market today will be the same drugs we are taking 10 years from now is unrealistic. 10 years ago protease inhibitors were just coming into existence...

There are some very credible theories out there that suggest the less established the virus is allowed to become in you body (ie, starting HAART earlier) the better chance you may have of one day clearing the virus from you body completely when some of the various new techniques that are being explored come into maturity.

If I had known what I know now back when I was diagnosed in march of 2005, I would have demanded to be put on the ARV's immediately.

I take sustiva and kivexa (abacavir, 3TC), two pills once a day. viral load was undetectable in 6 weeks but my doc didn't want me starting drugs until my CD4 count was down near 200. I went fro ma high of 480 to a low of 218 in less than 6 months but since starting the meds my CD4 count still hasn't broken the 400 mark again. I have since changed doctors because I think the advice I got was irresponsible and possibly did longer term damage that was entirely preventable.

Just remember that there are more things to consider than your next set of labs when making this decision!

PS, the sustiva bit goat chunks at first but now I hardly even notice it. just try not to start it at the beginning of a semester (if you're in school) because if it takes a while to adjust, your marks will definitely suffer at first.

Hey Atomic,

I agree with part of what you are saying.   I seriously doubt the drugs 10 years from now will be the same as the present ones offered.   I've read a few of the articles or rather scientific reviews etc.   

I have a different opinion on jumping on the meds bandwagon.   I'm more concerned about long term effects of taking some of these.   Correct me if I'm wrong, but didn't most studies indicate there was no benefit of putting people on meds right off and that's how they have now come up with these newer guidelines?

I'm not convinced either way.   I do know I wouldn't wait till my counts were too low or the virus too high, but ultimately I'm basing my decision on my overall health.   

This numbers game drives me nuts.   I swore I wasn't gona play it anymore and here I am talking about it again ;)   

Anyways, how has your experience been since you've started your particular combo?

Thanks,

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline AtomicA

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  • that's Famous with an F
Re: Should I Start Taking Meds
« Reply #11 on: December 21, 2006, 04:38:20 PM »
Austin - I know what you're saying, it's just that the paramenters of what they call a 'benefit' are based on todays medice and todays technology. If they ever come up with something like valproic acid that really does the trick of clearing out viral resevoirs they're probably gonna have to do and "oops, sorry about that" to all the people they told to wait. I don't think of the drugs they have around today as the final solution, more like what I do in the meantime to keep it in check and stay alive until a real cure comes along. I want to make sure that I am in the best possible position for that cure to work when it's approved.

to each their own of course! the drugs are no cake walk

Offline Ihavehope

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Re: Should I Start Taking Meds
« Reply #12 on: December 21, 2006, 04:46:19 PM »
Hey Atomica

I agree with you in regards to keeping yourself healthy until something better or a cure comes along. Unfortunately the virus is so potent that we have no control over it and T cells must be protected for survival. Hopefully better treatment gets a speed on things but I am thankful that drugs are available to keep us alive for now. I feel at times we are in the Dark Ages - No new approach has been approved.

Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline blondbeauty

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Re: Should I Start Taking Meds
« Reply #13 on: December 23, 2006, 05:47:40 PM »
I think it will be imposible to clear HIV completely from the body, but I am sure there will something to make our immune system capable of keeping it undetectable without meds.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: Should I Start Taking Meds
« Reply #14 on: January 28, 2007, 01:37:35 PM »
Thanks folks.

I'm leaning more towards starting therapy probably just after the new year. And I stand corrected, the combo my doc wants me to take is Sustiva and Truvada. Can't wait for those vivid dreams! I just hope the side effects aren't as tremendous as I've heard.

I just got my latest labs and said I'd share them.   Back in August last year they were 408, VL 22,000.    I had my labs done on Jan 18th and the numbers hadn't improved, but didn't change much over 4 1/2 months.   My CD4 count was 354 and VL was 28,000. 

My doctor still recomends no meds and told me to come back in May.   I've decided to go back to my prior doctor because this one isn't that great and her staff isn't on top of things.  She was opposed to me taking Atripla or anything with Sustiva because of the potential for increasing anxiety.  I figure screw that I'll just take more valium or something ; ) 

Anyways, I think it's important to have a really good HIV doctor who takes the time to answer questions and concerns and orders the proper medical tests on a regular basis.  If you aren't comfortable find a new one.   I shouldn't have ever left the first one.



Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline atlantabro

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Re: Should I Start Taking Meds
« Reply #15 on: April 11, 2007, 04:46:43 PM »
Ok, so I'm a bit scared now. Just got my latest lab results and my t-cells are now at 314 down from 342. Guess it's time to start taking meds? Still worried about side effects. I'm fine, physically, besides being nauseous and having slightly water-y stool (should I be worried about that?). Not sure what to do or how to feel. God, i wish there was a cure.

Offline Nashvegas

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Re: Should I Start Taking Meds
« Reply #16 on: April 11, 2007, 05:02:04 PM »
One thing to factor into the equation is how long you've been positive.  If this is your first year, your numbers may bounce around a bit.  My t-cells went down to 228 and then bounced up to 365 a month later.  I'm glad I didn't rush to get on meds, even though I was a bit freaked out at the time. 

Another option you might want to consider, since you're on the fence:  Don't wait a full three months to have your CD4 count done.  Do it in a month or 6 weeks and see how things look then. 
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline pinkadam

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Re: Should I Start Taking Meds
« Reply #17 on: April 11, 2007, 10:03:29 PM »
I think you should take opinion of multiple Doctors and decide yourself when to start. Most Doctors recommend medication when the T cell dropped close to 200 or Viral load is High

Offline panda

  • Member
  • Posts: 224
Re: Should I Start Taking Meds
« Reply #18 on: April 12, 2007, 12:31:42 AM »
I would start taking meds if i was in your shoes and i will tell you why, i was diagnossed  immediately after got infected when i was 18.5 (i am 32.5 today) , at this time these was no coktail only after 3 years something like that , at this time I was already cd4 = 0 and vl = over a milion , i have crossed the red line , so anyway i start taking the coktail and here i am taling with you with +800 cd4 and undetactable for over 4 years , the thing is that i could stop taking the drugs due to hard lipo i suffer from but the reason i can 't do that is that i was on 0 cd4 and if i quit now there is a huge chance i will drop back to 0cd4, therefore , u still have a chance if you'll start taking the meds on time before u go under 200 and some day you will have high cd4 with undetectable vl u might be able stop taking the drugs ofcourse only if your dr. will approve it.

 


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