What I’m about to say I’ve been thinking about for a while, but I’ve held my tongue ’cause I wasn’t sure it was my place to say anything.
I’m neg, but I have strong feelings about the meds poz guys are given. The gay community has welcomed the drugs with open arms but when I hear about guys who go on them right after becoming poz – it puts a shiver down my spine…
Before going on further I want to make a few things crystal clear. I’m not saying the meds aren’t wonderful and in many, if not most cases, I’m guessing these days they’re properly prescribed. My only fear is about the one-size-fits-all mentality and how they may be used too aggressively in certain cases.
What triggered me to write this post is an article talking about how they’re now seeing signs that long-term use of HIV drugs may cause premature aging and other health problems. Which made me think of my own interaction with some of “the best doctors” and “the best hospitals” and the care I saw a past boyfriend have also by top doctors and at a top hospital (he had AIDS and died 13 years ago)… I’m not going to say exactly what’s going on with me medically because it’s too personally identifiable, but it’s neurological and if it “went wrong” it would be very serious indeed.
I’ve been on Dilantin (an anti-seizure medication) on two occasions – when I was first diagnosed and later when there was a bit of a ‘relapse’. Thing is, I’ve never had an episode that was clearly a seizure – I’ve blacked out, my body has briefly gone rigid, and when I had my septum pierced and the piercer hit a nerve the blackout was combined with losing control of my bladder. But all of those episodes can be explained by 1) low blood sugar often combined with 2) extreme pain or stress. Simply put I “swoon” like a Victorian lady.
I have no problem with being put on Dilantin when I was first diagnosed – that doctor also took me off it a year or two later. My problem was when one of the top neurologists in NY put me on it and told me I had to stay on it for life or find another doctor. Meanwhile it was affecting my life – my gums were swelling and I wasn’t allowed more than one alcoholic drink a day. Luckily I had gone off it before and knew it had to be done over many months (going off Dilantin can cause seizures even in perfectly healthy people). There were a few close calls as I took myself off it, but having been off it for 5 years now there haven’t been any problems. I’m careful not to get low blood sugar and I avoid extreme pain and stress.
Thing is, this very well regarded doctor was perfectly happy having me on a medication for the rest of my life that had some serious side effects (the ones I mentioned were just the beginning of what was in store for me if I stayed on it). But more than that – many other neurologists would have agreed with her. It’s only now that I’ve been episode free for years that some doctors will agree with me that it isn’t necessary.
Then there were the unnecessary medical procedures I’ve gone through – I’m talking painful, expensive ones that weren’t absolutely necessary. I’ve had two stereotactic biopsies of my brain. Doing a biopsy of the brain isn’t a simple process. They screw a frame into your head (while your awake), so they can put a drilling rig on the frame to do the actual operation. In variably some emergency neurosurgery case will come along and you’re left in a hospital room for hours with a painful frame screwed into your head. And this is at one of the top cancer hospitals in the nation that’s generally has incredible patient care. But I want to reiterate – the biopsies weren’t absolutely necessary.
Then there was the bone marrow biopsy I was given to rule out one particular cause of my high blood pressure. The same doctor had already found one cause (which I thank her greatly for because it’s kept my blood pressure down while avoiding the really nasty general blood pressure meds). But the thing is – she didn’t think I actually had the thing that the bone marrow test would eliminate – it was just to rule out something that was rare. If anyone ever suggests you have an elective bone marrow biopsy – run the other way… It’s incredibly painful!
Then there’s my boyfriend’s experiences… He was in what was called “coop care” at one of the hospitals here in the City. That meant I moved into the hospital with him and we essentially had a hotel room at the hospital. The doctor prescribed a really powerful drug combination and cautioned me that drug A had to be given before drug B or else there would be big problems. I was there every night when he was given the drugs and one night I thought they were being given in the wrong order. I questioned the nurse and she assured me it was the right order. I should have stopped her but I accepted that she knew what she was doing. The next morning when we got up my boyfriend didn’t feel well. I took him upstairs to the nurses and his heart rate was well over 200 beats per minute. He he was a weak AIDS patient and his heart had been running the equivalent of a marathon all night… Needless to say that caused big problems for him – sent him into a tailspin and unfortunately he never recovered – it was downhill from there until he died a couple months later. Who knows what would have happened if he hadn’t gotten the drugs in the wrong order that night. He might have gotten better, lasted a year and been able to take protease inhibitors and could still be alive.
I could go on and on… Even recently I’ve seen things happening to a friend of ours who’s been in the hospital for the past month… My point is doctors sometimes make big mistakes or they do potentially harmful things to you ironically to cover their asses when it comes to liability. Put in a context of HIV – you could be given a drug cocktail that you don’t really need simply because it’s the standard practice and if the doctor steps outside of the standard practice they have big liability problems. Whereas they’re protected if problems arise if it was the accepted practice at the time…
There’s also a lot of what you might call “treating the chart”, not the symptoms. In other words, you’re given medications for things that aren’t (yet) causing problems. There’s a fine line here. Take my high blood pressure. Hypertension is something that we have a lot of long term data on. We know it’s a “silent killer” and if left untreated can cause serious problems. But the drugs can also cause problems too. I’m lucky – there’s a drug that I can take that controls one particular chemical in my body that keeps my blood pressure in check. That med seems to extremely mild, but other people have to take some horrible meds to keep their blood pressure under control. The only good news is that there are many decades of experience with hypertension and even with some of the drugs.
But then there are other drugs that treat things people used to just live with – like bone density problems. Bone density is a good example of “treating the chart” since low bone density is potentially dangerous, but now we’re seeing that the drugs seem to have long-term problems and you’re left wondering which problem is worse – the low bone density or the problems the drugs cause?
We’ve known for a while that HIV/AIDS medications can cause problems. There was a day when all too often the problems the drugs caused were worse than the problems of the disease itself. Luckily the meds are getting better, but as the study I mentioned above shows – it doesn’t mean there are no side effects.
This is the part of the post I’m wary about writing… In different ways I’ve been there, but I don’t have HIV so I feel weird about saying how a poz person should approach their treatment plan. But at the same time doctors are doctors… All I can say for sure is be careful and don’t take what the doctor says for absolute truth. They can be individually wrong and they can be wrong in group decisions as well. Their motivation in recommending a treatment plan could be the avoidance of a malpractice suit or they could prescribe a lot of drugs because pharmaceutical sales reps pay them a lot of attention and does nice things for them (I’ve seen this one in action too)…
There are no easy answers here. But I often wonder what I would do if I were poz. One thing I do know – I wouldn’t start taking powerful drugs just because a number on a chart went over a certain threshold – at least not without doing a lot of research of my own to validate the doctors recommendation. And just as now my blood pressure is on the high side of acceptable and I won’t take additional meds to lower it further – personally, I’d err just slightly on the side of fewer drugs and the mildest drugs…
So many people just accept what doctors say. I’ve done it myself and too often lived to regret it. Question your doctors over and over – make sure you understand and agree with everything they do to you. Do your own research (off things like pubmed, medscape, and talking to others with hard scientific evidence). If it pisses your doctor off, get another doctor. Oh yeah – and don’t think herbal remedies are any different – they can be just as destructive, but that’s another post…
