Meds, Mind, Body & Benefits > Mental Health & HIV

HIV Meds and Mental health

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I am a long term survivor of HIV (approximately 25 years now) and work in the HIV fields as a personal assistant to an HIV doctor in a private practice.  One question that never seems to get asked but should be (IMHO) something EVERY person who is on treatment is this:

What are the long term mental side effects (both temporary and permanent) from taking these highly toxic medications for most of our lives?  It goes to reason that as chemical beings (which we are) who each have unique amounts of any given chemical in our system (both naturally occurring and the ones we choose to ingest either medically or socially) that these drugs will have some sort of long term effect on our brains.  This just seems to be (to me at least) an obvious conclusion... so the question is, why are there no studies being done to determine the long term effects these drugs are having on our brains and not just on our bodies - since we have already determined that many of them do horrible and sometimes irreversible damage to our major organs is stands to reason the long term effects on these medications should be just as damaging (if not more so) to our brains.  So does anyone out there know of any studies being done in regards to this and if not have you asked yourself (and your doctor and his drug reps) why no one is looking into this?  Once upon a time there was a condition known as "AIDS DEMENTIA" - the question now is will we now be suffering through another period of HIV related mental illnesses that are being caused by the meds themselves?  Has it occurred to anyone yet that the depression and anxious feelings and anger and other feelings most of us did not normally experience on a daily basis could be the result of the meds effects on our brains?

If you are an activist I think this is the one of the most important issues facing the HIV community now and one that needs to be looked at seriously.

I don't know of studies and haven't actually looked into the matter, but I do agree that it defies logic to believe that the meds don't have an effect on our mental capabilities.

It's one of the reasons I fear taking meds.

However I also know that HIV that is allowed to run untreated can cause devastating and in many cases irreversible effects on a person's mental capabilities as well.

"However I also know that HIV that is allowed to run untreated can cause devastating and in many cases irreversible effects on a person's mental capabilities as well."

No question or debate about that whatsoever that's for sure.  But it seems to me that now that we have the physical side of the battle under constant research and some amount of control it does seem a little bit remiss that absolutely no one (scientists, doctors. activists, pharmaceutical companies, etc) are not even acknowledging this issue much less addressing it in a clinical way or in any political arenas.

If we are going to live "longer fuller"  lives shouldn't we at least have a semblance of an idea of just how messed up our brains are going to be from these meds... you know - just to be prepared for what could turn out to be a large amount of long term survivors who end up in constant need of supervision due to their brains being fried by the drugs that saved our lives?

It does kind of pay to think about the future still doesn't it?  In the practice I work at we see a very large amount of HIV patients with a multitude of mental/physiological issues that we were not seeing 10 years ago  and that we do not see on anywhere near the same level in non infected patients.  Seems to me that there logically has to be some correlation and some sort of research should be being conducted to get answers to this important question.

I'm sorry.  I cant really relate to the idea that meds are going to cause brain damage before HIV will.  MY friend Jim died in Dec 06 because HIV destroyed his brain.   If he just could have gotten those T cells up....maybe he would not have died of PML.

Quote you: ""However I also know that HIV that is allowed to run untreated can cause devastating and in many cases irreversible effects on a person's mental capabilities as well."
.............................................................Can you say death?  HIV untreated can cause brain damage and death.

uhm actually I was quoting Iggy but in any case I am truly sorry for your loss.

The question here however, is not whether or not to take meds  (and yes I do know a few very long term survivors who never have and are doing quite well which makes me jealous as all hell lol - I have been taking meds for 20 years now pretty much so I am definitely not saying one shouldn't take their meds becasue of the liver, heart and or other organ damage they all cause... I'll take that extra time and deal with those complications when they come) but rather the question is WHAT are these meds doing to us long term psychologically and thus, what should we and the healthcare system "look forward to" and be prepared for in say 20 years when (and if) large groups of long term survivors of HIV start becoming psychotic or suicidal or develop and number of other mental conditions requiring full time treatment and care?  The question is why is no one doing research now on this so that they may be able to prevent them from happening or at least recognize when they do begin to happen.  I fully expect to live to 100 and I know how crazy I am now... I just wonder how much crazier these meds will make me as I get older?  This is a simple fact - every drug we ingest causes different reactions in every person, dependant upon the dosage, patient weight, patient internal chemical makeup, and so forth.  It is also basic fact that long term usage of any drug causes your brain (which is full of chemicals all responding to the new chemicals pouring into their system) to eventually create entire new neural pathway and, depending on the toxicity of the chemicals being introduced to the system, can destroy old neural pathways.  Same principle that applies to the multitude of illegal drugs like Heroin and Methamphetamines and so forth also should (in theory due to the high toxicity of both the legal drugs we take and the illegal ones we "don't") should hold true. And theoretically the same long term irreversible side effects could pop up as with any other long term user of a drug.  Just because the ones we take for our condition is legal doesn't automatically make it safe in the long run, particularly when we are talking about drugs that have no "long run" to look at.

No one is saying don't take your meds they could make you crazy in 20 years all I (and others) are saying is this is an issue that needs to be addressed and so far not only is it not being adddressed it doesn't even seem to be on the minds of the The US Government, The FDA, The Pharma Companies, the doctors or even most patients. 

Short sightedness played a huge part in the initial spread of HIV - do we really want to repeat history on a mental health level in our community?


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