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Ive had hiv since 1986, the doc wants me to start meds asap,i Ive made it this far and am scared of  the meds. Any input, last cd4 count in the 400s, has been down to 280

help with decision
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Author Topic: starting meds  (Read 2797 times)

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Offline chipreck

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starting meds
« on: August 16, 2010, 02:20:44 PM »
 Ive had hiv since the mid 1980s.  I have not been on meds. The doc says to start asap. my cd4 count is normally in the 400s droping from time to time, low of 280. Im scared of the meds. can anyone give me advice?

Offline bear60

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Re: starting meds
« Reply #1 on: August 16, 2010, 04:19:24 PM »
Well, you will get a variety of opinions here but if you want mine, you probably should start meds.  I am in a similar situation as you. I have been positive since I tested in 1989.  Never been on meds.  As of today my CD4 counts have fluctuated between 500 and 1200.  I have never been as low as 300 or 280 or wahtever.  II have been identified as a long term non progressor.  I am in the Boston study of controllers.
If my CD4 counts drop below 500 and stay there, I would start meds.  BECAUSE, I have seen the misery for those who refused to be tested or refused to start meds and ended up a walking corpse.  And then died an unpleasant death.
Poz Bear Type in Philadelphia

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: starting meds
« Reply #2 on: August 16, 2010, 08:20:32 PM »
BECAUSE, I have seen the misery for those who refused to be tested or refused to start meds and ended up a walking corpse.

Welcome Chip,

What Joel describes above, is what happened to me.  I tested positive in 1985,  but didn't start meds until 2003. Almost 18 years to the day of testing positive. Prior to 2003 , the last blood test I had , was in 1999, at that time the viral load and t-cell count were in the mid 900 range.

Somewhere after that last test, in 1999, things seemed to fall apart quite quickly.  I still refused to start on meds, blaming everything that was going on with my body, on anything else that I could find, except HIV.

By the time I started on meds in October of 2003, my t-cells were at 16, and viral load at 500,000.

I had wasted away, to 140 lbs from 175 pounds less than 18 months earlier, developed pneumonia, and thrush. and yes, I looked like a walking corpse.

If your doctor thinks that it may be time to start on meds, I would listen very closely to him.

I was also scared of starting meds. I remember watching the effects of AZT, on several of my friends.  I am sure after seeing this, it is,  what stuck in my mind, and partly the reason I held off.

  I regret that decision, because it almost killed me in 2003.  I can understand how tough that decision is for you, but believe me,  you don't want to get where I got.  Save that immune system of yours.

For me,  Starting on meds was pretty easy. The side effects of starting meds, were very few, if any,   but was a lot easier to go through, than what I was dealing with 18 months prior to starting.  

I am 58 years of age,  I am still fortunate to be able to work full time. I have a few issues that I am dealing with, but overall,  I've been pretty healthy these past 7 years after starting on meds.  I just wished I had started sooner, and not gotten so cocky, and so far into denial.

Now, I know you didn't do , what I did, and stopped getting blood tests, and keeping yourself monitored,  So,  sit down with your doctor again, and discuss your options, also let him know your fears, about starting on meds.  I can tell you that the meds today, are a lot more forgiving than what I witnessed in the late 80's to mid 90's.



« Last Edit: August 16, 2010, 08:22:25 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg






Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 4/11/16,  t-cells are at 385,   Viral load remains <40

Current % is at 14%

 64 years young.

Offline leatherman

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Re: starting meds
« Reply #3 on: August 16, 2010, 08:47:29 PM »

Im scared of the meds.
having been told to take the med (AZT) in 93, and pray that I didn't die and lived long enough for the med to help, I never understand why people are scared of meds, every since 2005 or so. ???

would you be scared if they told you to take antibiotics to get better? would you be scared if they told you that you had to have a shot of insulin every day? Goodness knows, hiv meds STOP hiv from replicating and being able to destroy your immune system. Why wouldn't you want to take them? I've known too many friends and two partner who didn't even have meds or didn't take them and are dead.

I take 3 pills (truvada, reyetaz, norvir) with my dinner every night with no side effects, and I'm alive nearly 20 yrs ;D after being diagnosed with AIDS, in a hospital and being told I was going to die. I just can't imagine ever being scared of meds (and I had a boat load of side effects on those older meds) that have kept me alive and gotten me healthier than I've been in 25 yrs.

Hopefully, you can push passed your fears ;) and take the meds (if this really is the right time) to keep from going down the road where HIV with eventually, inevitably end.
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015

Offline aztecan

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  • Posts: 5,509
  • 30 years positive, 58 years a pain in the butt
Re: starting meds
« Reply #4 on: August 16, 2010, 10:33:02 PM »
Hey Chip,

Welcome to the forums. I am glad you have joined in. I think you will find this a good place to take part in.

Now, regarding meds, I understand your trepidation. But, at the same time, I know what waiting can do.

I tested positive in 85, started meds in 96, on the old cocktails. EEK! Scary stuff! But, I survived to tell the tale, which is more than many, many of my friends did.

I think I would listen to your doctor. I think Ray's suggestion of having a heart-to-heart with your doctor would probably be a good idea too.

While we're at it, is there a support group in your area where you could commiserate and compare notes with others also facing the possibility of starting meds?

Whatever you decide, remember we'll be here to support you.



"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Jeff G

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Re: starting meds
« Reply #5 on: August 16, 2010, 11:41:24 PM »
Hi Chip. Welcome to the forums .

If your doctor is recommending you start meds and your cd4 count is in decline its probably a good idea to start . The meds around today have manageable if any side effects to consider . You have much to gain by trying and much to lose if you don't . 

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Offline Billy B

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  • Posts: 374
Re: starting meds
« Reply #6 on: August 17, 2010, 12:41:23 PM »
Hello Chip- I have been + for many years (since around 93) and only started meds in March. Isentress and Truvada have been kind to me and I went UD in about six weeks. My CD4s have not had a big gain but my IDS said sometimes it takes an older patients a little longer to regain them and the numbers may not reach as high a level as a younger person.
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
VL  UD   CD4 450 CD4% 29.8 09/10/13
VL  UD   CD4 430 CD4% 31.0 04/29/14
VL  UD   CD4 520 CD4% 34.8 11/05/15
VL  UD   CD4 440 CD4% 33.5 03/10/15

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: starting meds
« Reply #7 on: August 17, 2010, 12:58:54 PM »
My CD4s have not had a big gain but my IDS said sometimes it takes an older patients a little longer to regain them and the numbers may not reach as high a level as a younger person.
studies have also shown that people reaching a very low nadir (say <50 cd4) may likely never increase to high levels again. ;) For myself, having dipped down to numbers like 5, 7, and 12, it has taken 16 yrs of meds to just reach an all-time high of 318. ;D However, I haven't been back in the hospital for over 12 years. It's not necessarily how many cd4 cells you have; but how well they work. ;)
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015

Offline chipreck

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  • Posts: 4
Re: starting meds
« Reply #8 on: August 17, 2010, 05:10:55 PM »
 Thank all of you for your input. Ill start  atripla next month. I didnt know so many good people exsist in one place. Thank you for your warm welcome  :D


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