Tested Poz

[bearbandit]

Rather than go into a natural history of untreated HIV which you can read up on elsewhere, I'll say that your numbers sound about right for someone who's just tested positive with a two year old negative test. Probably not recently, though, as the viral load spikes during seroconversion illness often reaching 6 figures, sometimes even 7. It then drops back to a much lower level (the "latency" stage). I'm not familiar with the the QN before the PCR in your viral load: in the UK the VL test is pretty much standardised. However, whether your VL is 85k or 8k, were I in your position, rather than being nearly thirty years down the line, I'd be researching drug regimes. As long as the virus is at detectable levels in your blood it's capable of doing damage, not only by attacking CD4 cells but also by causing inflammation of your organs. 

Once on treatment it's the viral load that's the important marker rather than the CD4 as it was in years past. The problem with the CD4 is that it varies, not only from person to person, but from hour to hour. In fact if you go outside for a quick cigarette before have blood drawn for a CD4 test, it'll return a higher result than it would have done.

It sounds like you're doing everything right, especially as regards sticking to your comfort limits. Just remember that the only stupid question is the one you didn't ask. 

[tallslenderguy]

 whether your VL is 85k or 8k, were I in your position, rather than being nearly thirty years down the line, I'd be researching drug regimes. As long as the virus is at detectable levels in your blood it's capable of doing damage, not only by attacking CD4 cells but also by causing inflammation of your organs. 

 

Thanks bear,

I have been reading up on the meds, so far "Genvoya" looks like one of the better options. It looks like a variation on Atripla, but supposedly with fewer side effects. Since it was just FDA approved in November 2015, I'm not sure if I would want to start on something that doesn't have a longer history of use.  I can take it since I am ARV naive and it looks as if it avoids some of the side effects (kidney and bone density issues) that some of the other meds still have, but at the same time, those are still possible side effects. Not sure of all the criteria the infectious specialist uses to choose an initial med, but seems close kidney and liver monitoring are important components of ongoing testing, along with viral load monitoring. 

[bearbandit]

Genvoya isn't actually a new drug, but the reformulation of one of its components made new approval necessary (and coincidentally extended the manufacturer's patent that bit further...). Look up stribild: basically the same drug...

Let's go through it drug by drug... Elvitegravir is a new class of drug, poised to cause a similar revolution to the one caused by the protease inhibitors twenty years ago when people started recovering from aids. it's an integrase inhibitor, interfering with HIV's attempts to force its way into your DNA to reproduce itself. I've been on two of this family (only three have made it to market and the fourth, cabotegravir, is the one that's got people because of the possibility of it being used in an injectable, long life, form, but that's a couple of years from market yet. I've got a history of side effect issues and resistance issues sufficiently bad that there's nothing aside from my current regimen I can take. This includes an integrase inhibitor, dolutegravir. I've found the integrase inhibitors the easiest ARVs to take yet: my system lets me know in no uncertain terms when it and a drug don't get on and not a whiff of a problem with the integrase inhibitors. They're also bloody effective.

Cobicistat is a booster: it has little if any antiviral effect. Its use is in pre-empting the enzymes other drugs need to be metabolised making those drugs wait until the cobicistat has been metabolised, with the result that the other drugs stay in your system longer. This effect was discovered in the late nineties when there were a series of deaths due to ecstacy overdose where the deceased had taken a fairly small amount: it turned out in each case that they were on ritonavir, a protease inhibitor now used in much smaller doses only for its boosting effect. The boosting effect makes it important that anyone prescribing for you knows you're taking cobicistat (for instance if you use viagra at 100mg now, with cobicistat a 25mg viagra would be ample).

Emtricitabine (also known as FTC) is a nuke (nucleoside/nucleotide reverse transcriptase inhibitor) which interferes with the production of reverse transcriptase, necessary for HIV's replication. It's a pretty well behaved drug, with a low side effect profile.

Finally tenofovir (another nuke) is the drug that's been reformulated: TDF is the old version and TAF is the new one. TDF is the drug that's responsible for most ARV-related kidney and bone issues. It was because of these that it was reformulated as TAF, which has better tissue penetration and required a dosage of less than 10% of TDF to achieve the same results. The kidney and bone issues have proven to be much less with TAF, though it should be stressed that with proper monitoring any damage done by TDF is reversible on stopping the drug. This means at least two kidney function tests per year and for the over 50s a regular DEXA scan to check bone density. 

FTC and TDF together comprise truvada, the drug used for PrEP. If it's safe enough to hand out to people to keep them HIV-, they've got to be sure of the medium term effects (we don't know the long term effects of any ARV - they're finding that out from people like me). All but one of the other combination tablets contain TDF, but with the current safeguards I'm happy about recommending tenofovir as a damn good drug that just needs an eye kept on it. I'm the 1 in 100,000 for whom tenofovir wasn't a good idea: I became seriously ill because my doctor at the time didn't pay sufficient attention to my bloods. I literally know no-one else (or even of anyone else) in the UK (and I'm well plugged in to the various patient groups) who has had severe Fanconi's syndrome as a result of tenofovir. So I'd be just as happy to recommend stribild as genvoya, and of course truvada for PrEP.

The one piece of advice I would give as regards ARVs is to avoid, unless it's absolutely necessary, efavirenz (Sustiva) and the combination tablet Atripla which contains efavirenz. Many people have no issues with it, but up to 30% of people using efavirenz experience central nervous system side effects which usually show as disturbed sleep and extremely vivid dreams, which can last well into waking time so that it's like tripping. Some people enjoy the effects (free acid!), while others find them extremely disturbing. Efavirenz is now no longer used (as far as I know) as a first line therapy in the UK.

 

If you're happy with multiple pills, the commonest combinations in the UK involve an integrase inhibitor with truvada or abacavir/lamivudine. If your doctor is thinking of abacavir it's important to be tested for the presence of the gene HLA*5701: if it's there, abacavir is off the menu as it has the potential to land you in intensive care or worse (I can afford to be flippant because guess which gene I have...). It's not unusual to shift around a couple of times with your prescription until you find the regime that's right for you: something that wasn't possible in the old days. My rule of thumb is to try something for thirty days and tough anything out. At the end of thirty days see my doctor if necessary to discuss things, then take it for another two months before making a final "this suits me" decision. Good luck...

[tallslenderguy]

Wow Bearbandit,

Thank you for taking the time to write that out, this is extremely valuable information, made especially so because it has your added experience. This is very helpful. 

[bearbandit]

  Knowledge is power...

[Guest]

Two pieces of advice that my doctor gave me when I found out that I was poz that were really helpful:

 

1> Only join support groups of newly infected guys. Your situation is very different than guys who were infected in the '80s and early '90s before today's meds became available.

 

2> Be careful about who you disclose to. I've only told my doctors, my bf, one other close friend and my fuck partners. Once you tell the world you can't take it back.

 

Good luck!

[tallslenderguy]

Hey guys, just an update for those of you who may be following this thread (and for future generations of readers lol).

 

I had my first appointment with an infectious disease (ID) doctor on Feb 25, a little more than a month after getting diagnosed with HIV. My own feelings after being diagnosed were that I wanted to get on meds as quickly as possible to get my VL down to undetectable. Everything I have read points to that as the best approach in terms of reducing the affects of the virus on me and reducing the likelihood of spreading it (not of a chasing or gifting mindset here). 

 

I feel I really lucked out with my ID doctor, he's been working with HIV patients since the 80's and really seems up on the latest. I asked him point blank if he had any issues treating a gay guy. He thanked me for asking and told me while he is not gay, he explained how he'd been treating gays for years and some of his experiences. The guy has a heart, and I was grateful to get a glimpse. He gave me a thorough exam and ordered a boat load of blood work done. He didn't limit his questions or focus to HIV, but was obviously familiar and savvy enough to discuss all STD's. He also made sure I was vaccinated for pneumonia and Hep A before leaving his office and I'll be getting a second pneumonia vaccine in a few weeks (both cover different strains). Thorough. He did not start me on meds yet because he wanted to do genetic testing first to make sure the meds he prescribes are a fit for me. Thorough again. He also helped come up with a solution for when I do get prescriptions, being able to get them at a place where I can maintain my privacy (I work at a hospital and my insurance requires I get my meds through the hospital, thankfully we have several hospitals in the chain and I can get my meds from the pharmacy of another of the hospitals in the chain in another town where the whole staff doesn't know me).

 

I still haven't experienced any real panic or sense of desperation with having this diagnosis. Cognitively, I didn't expect any of that, but emotions can have a mind of their own... so far, mine are behaving.

[tallslenderguy]

Hi guys,

For those of you following my story.

 

I went back to the doctor this last Monday (3/21/16) and he indicated that my tests demonstrated the strain of HIV that I have has no resistance to any of the meds. so today I will start on Truvada and Tivicay (dolutegravir). I'm on my bed typing this with the containers sitting next to me. Despite their reputation for low side effects, I have a little trepidation about taking the first dose. I shouldn't drive a school bus until I know how they are going to affect me. I was provided with copay cards that are good for a year, between them and my insurance I had zero cost. Wow. 

 

Kind of a funny story. I am critical care nurse in a hospital and am fairly well known, so I asked the doctor to phone the prescription in to a town where I live, 10 miles away. There was one pharmacy tech in particular that I work with often who I was trying to keep my diagnosis from for some privacy. She greeted me by name as I walked in to get my prescription today and ended up waiting on me. LOL, wtf, I had no idea she worked at both hospitals. 

[bearbandit]

The prescription sounds good - hope you've taken your first dose by the time you see this. Even in the short term, the side effect profile while your body gets used to these strange new chemicals you're making it process is pretty good. I honestly wouldn't expect any more than feeling a bit "iffy" for a few days, as though you're coming down with the current thing that's doing the rounds (at the supermarket - not the bars!). Hope you fall into the bracket that has no problems at all, which is most people...

As regards your colleague, I decided long ago that knowledge of my HIV status was very value, so I destroyed its value by making it common knowledge. Not everyone can do that, but do remember that she's bound by a code of ethics to observe your confidentiality, just as you're expected not to gossip about your patients...

One word about dolutegravir: don't take mineral supplements within six hours of dolutegravir... The reason is that the molecules of the supplements get tangled with (well, that's how it was explained to me!) the dolutegravir molecules making less dolutegravir available in your blood. Ordinary food is fine, but calcium/vitamin D as given for osteoporosis, for example is definitely one to take later/earlier...

[tallslenderguy]

bearbandit,

Thanks for the input, it's always appreciated. 

I took my first dose after lunch and went outside and gardened, no nausea or initial side effects. I'll take it a month then get the round of tests for kidney function, etc. Fingers crossed. I have never been one to have to take meds, but when I do I usually tolerate them well. 

 

I do know the colleague is bound by a code of ethics, and HIPPA as well in the U.S. I'm not really worried about people knowing. I do not invite adversity, but have dealt with it enough that I know how. Most of the people I work with are amazing and wonderful people, I would not expect a bad response... but Ive been wrong before. Either way, I'm not going to worry about it. It was really kind of funny the way it happened. 

[highcountrybb]

Edited March 24, 2016 by drscorpio
Poz Fetish posts go in The Backroom only

[Guest indynudeguy]

Hey Guy,  Thank you so much for sharing your experience.  Whether you realize it or not your posts are helping a lot of guys.  I understand you are concerned about your job, acceptance, etc.  But first off, there are a lot of nice and accepting people in the world; secondly, your education/profession gives you an added opportunity as a role model for others.  Secrets are hard to keep, and as I have learned, just because people don't say anything, doesn't mean they don't know.   You sound like a great guy.