How long for your HIV to progress?

[pozsewerpig]

How long did it take you to go from contracting HIV to having AIDS?

[WestPhillyGuy]

Looking forward to answers to this question.

[viking8x6]

Moderator's Note: This topic is in the Health Forums. DO NOT post any HIV fetish-oriented comments in this thread. As a reminder, AIDS fetish is NOT allowed anywhere on the site.

[ErosWired]

Let’s be very, very clear that the OP’s topic title is an inquiry about how long one would normally expect an untreated HIV infection to develop to late-stage disease, that is, AIDS. The title does not imply that there is a good or preferred time for an HIV-positive person to choose to let his condition deteriorate to AIDS. It’s never “time to let it happen”. (And if the OP did mean to imply that, the topic has no place on the health board.)

The time from seroconversion to diagnosis of AIDS will vary based on a number of factors, with a median of 12 years within a range of 9 months to 20 years. In my case, I believe the process took just over three years, from my hospitalization for seroconversion illness to my hospitalization in which I was diagnosed with AIDS.

[pozsewerpig]

13 hours ago, ErosWired said:

(And if the OP did mean to imply that, the topic has no place on the health board.)

 

It wasn't my intention for the post to do anything other than spark a chance for members to relate their experiences without glorifying the process. I struggled whether to post this in the general HIV health forum or in the backroom. I chose the general HIV health forum to be able to cut to the chase quicker and to keep fictional details and fantasizing to a minimum.

 

Edited November 16, 2023 by pozsewerpig

[ErosWired]

I should add that the information in my post above applies to an untreated infection.  If a person is diagnosed as HIV -positive, begins treatment, and adheres to that treatment consistently, the answer to how long it takes to get AIDS is: He never will.

This is the miracle science has given us, that even though we cannot (yet) remove the Enemy Virus from our bodies, we now have medicines that stop its destructive work so that we never see the end result. I take my pill every single day, without fail, and have done so for more than nine years now. The pill I take is not just a packet of pharmaceuticals to me - it is a dose of Life. Having had an AIDS diagnosis, I will always technically have AIDS, but I will never let it have another chance at killing me. 

[HardaddyMA]

This is always a difficult topic for me- I was infected in 1988 but was not diagnosed until about 10-11 years later- so I have lived OVER half my 71 years with this HIV-virus in my blood and body- and the previous post about 'the miracle' of modern science that has made it possible for so many of us to live so very much longer than the odds-makers would have given us at the beginning of this epidemic- and there are days when I think how much simpler it would be if I had never been infected- BUT I WAS and I have to live with the consequences EVERY DAY- med holidays and missed doses are not a good way to make your life more interesting- not sure WHAT I am trying to get to here- other than the fact that such major changes in so many lives can be difficult and we need to be respectful of all points of view while respecting the limits of what you can post online and personal behaviors we can encourage ( or not) in other people- it's NEVER easy and we must always keep the best possible visions of what life can be for us- BUT in the end I can only think about my youngest brother who died from AIDS in 1996- just as effective AIDS-drugs were becoming available- its for him and so many of my dear departed friends whose lives were cut short by this incredible, disastrous disease that I take my meds every day! BLESSINGS!!

[Bimarried001]

On 11/15/2023 at 2:22 PM, WestPhillyGuy said:

Looking forward to answers to this question.

Why?

[funpozbottom]

The short answer is: I don't know. 

I was not testing regularly, so I don't know when I was infected. (I have a suspicion as to who/when I was infected, but can't verify.)  Also, I never got the "fuck flu" -- or rather, if I did get it, it wasn't bad enough, or different enough from any other illness to warrant suspicion.  When I was finally diagnosed, my CD4 count was under 20. Since the threshold for AIDS is a CD4 under 200, I'd probably been, unknowingly, in the classification for some time. The doctor said that, based on averages, I'd probably been infected about 10 years before -- and based on that, it kind of lines up with my suspect, so 10 years is probably a good rough estimate.  

While I don't know how long it took to reach AIDS status, I do know how long it is taking to return from AIDS to a normal CD4 count.  It took about 5 years to creep above the 200 mark. Unfortunately, that only brought me above the AIDS threshold. It didn't mean I had a normal immune system. If I'm lucky, I'll reach 500 sometime next year. If I do, it will be  over 10 years from diagnosis to regaining a relatively normal immune system -- assuming the meds continue to work, and they don't destroy my liver or kidneys first.

[ErosWired]

2 hours ago, funpozbottom said:

It took about 5 years to creep above the 200 mark.

Christ - that’s a hell of an uphill battle. Did they have you on prophylaxis the whole time? I got over 200 from a low of 49 within a year, but nine years on I’ve only topped 400 once, and have mostly stayed in the 250-350 range. I’ll probably never see 500 again.

[funpozbottom]

8 hours ago, ErosWired said:

Christ - that’s a hell of an uphill battle. Did they have you on prophylaxis the whole time? I got over 200 from a low of 49 within a year, but nine years on I’ve only topped 400 once, and have mostly stayed in the 250-350 range. I’ll probably never see 500 again.

Yes, it's been a long slow process. Some people rebound quickly while others plateau out. But my progress has been a fairly steady two steps forward and one step back with a net gain of at most 50 a year. I've done a little better the past couple years -- I think the CoVid shots sort of did a jump start on my immune system to make it work a little harder. I'm in the mid-400's now. Next labs will tell if the gains are going to stay.

For prophylaxis, they had me on Mepron (atovaquone)  until my numbers were steady over 150. For anyone who doesn't know what Mepron is, it's a liquid suspension that is prescribed to help prevent pneumonia in AIDS patients.  It's great stuff. It has the consistency, smell, and taste of banana yellow latex paint. I think the only difference between the two is that, if you applied both to a wall, the Mepron would give better coverage.

[muscmtl]

It's been 38 yrs for me, still waiting 

[Incognito91]

6 hours ago, muscmtl said:

It's been 38 yrs for me, still waiting 

Are you a long term non-progresser/elite controller? I am always curious about others. 

My ex who was diagnosed HIV+ in the late 80s (whom I lost touch with around 2014) never took meds, but he never progressed to AIDs. He wasn't undetectable, but always retained quite good levels of CD4 the entire time we were in touch. But his then partner in the late 80s, who was diagnosed the same time as him, passed away from AIDs related diseases. My ex's doctor kept telling him to get on meds and that it was unusual for it not to progress - so I believe this is quite uncommon.

My husband is HIV+ but remains undetectable without medication since his diagnosis more than 20 years ago. He often gets asked to donate blood for studies cuz of how unusual it is - so I believe this is extremely rare.

Edited November 18, 2023 by Incognito91

[muscmtl]

Same here. pure dna luck

[hairyone]

Just about 2 years.  I was exposed Sept 2001; fuck flu Oct 2001; and confirmed positive Dec 24, 2001 (merry fuckin Christmas).  At the time, the medication cocktails were just coming out and we didn't know if starting early or waiting was the way to go.  As we know now, starting early is the way to go.  I didn't choose wisely.  I waited until I was near formal AIDS diagnosis.  In July of 2003, I developed Oral hairy leukoplakia, and my CD4 was 232.  As you see in my records below, I probably only had another few months before the CD4 dropped below 200 which would have put me right at the 2 year mark for seroconversion.   (For the CD4/CD8 percentage, 40% is ideal. 30-61% is ok.)  The viral count was probably MUCH higher than 750K, the test that was used on me at the time topped out at 750K.  With my leukoplakia and general health, it was probably well over a million.  Other tests were available to determine exactly the viral load but wasn't necessary since I chose to start the meds.  It took one year to get undetectable.  Even though I've been in the "normal" range for years, my numbers are still continuing to trend higher (subtly but still generally improving) 20 years later.