sub-communities

[Johncameron]

I am still trying to find my way around this community. Are there sub-groups. I really want to read and discuss long term outcomes. I was diagnosed 15 years ago and have never been ill but I do worry about what the future holds for me; taking toxic medication every day.

[Aug69_]

I agree I have taken medication since 2000 so 15 years. I don't know what affects taken the medication has but I know since taken meds I have had various issues with my stomach along with tiredness. Have never been really ill but live in fear it will happen every time I get flu I think this is it. Also like you think internally something must be going on by taken toxic combination

[Johncameron in reply to Aug69_]

My doctor tells me that there's no reason I shouldn't live to 80 but I don't know if he is just helping me think positively. I get terrible body jerks and convulsions associated with restless leg syndrome but I am told that is not due to the medication, but they can't find any other cause.

[runningwld6 in reply to Johncameron]

Well the thing now is that the drugs aren't toxic like they used to be. The first drug, AZT was actually first tried as a chemo drug, but large clinical trials are established to look for possible adverse events. And while long term use is hard to assess for, it is in common for almost any drug I know of to have a new side effect due to long term use. When used at the correct therapeutic dose, the drug level should be low enough to not cause any problems even if taken a long time. Just think about it like blood pressure of diabetes medications- people take them for years and just because they take them a long time doesn't mean they accumulating some long term damage. Fortunately that's how HIV is looking like these days- a chronic condition. And that's a good thing and why your doctor says you could live to be that old

[Johncameron]

what I find quite frustrating is that I think that if I stopped taking the drugs either the virus would not return or if it did, the strain left in my system would be so compromised, having fought the drugs for so long, as to be benign, but I am not going to find out, because I am not going to stop taking the meds until my doctor tells me I can -maybe when I am 80!! Then I can tell the word.

[runningwld6]

The restless leg syndrome sounds tough, but many people get it who aren't on HIV meds too.

Also unfortunately, the virus doesn't work the way you describe. It doesn't get weak by fighting the drugs. The drugs work on actively replicating virus, but there is a reservoir of Cd4 cells that have the virus in a latent state- meaning it is not replicating and won't be affected by the drugs. These latent cd4 cells do turn over but according to estimates, it would take 80 years for enough to activate so that the virus was cleared. Just try and think about it like hypertension- you've got it, need to take a pill once a day, but as long as you do, the disease won't kill you by making you immunocompromised. That being said, heart disease is worsened so stay on top of your cholesterol! Sounds silly but true

[Johncameron in reply to runningwld6]

Some scientists believe that as long as the virus remains as one culture within a host it will mutate in such a manner that it becomes resistant to certain compounds but more benign in terms of threat to life.

[runningwld6 in reply to Johncameron]

Scientists often have many opinions about a topic but I do not believe there is a large consensus or evidence supporting this claim. Not to say it isn't true but not something worth taking any action on, which it sounds like you agree with