As you may know, I suffer from Central Pain Syndrome, or CPS, as a result of the stroke I suffered over four years ago. I’m a member of a Yahoo group on this and one of the things the membership does is pass along information about medications and other techniques that might help in dealing with our pain.
Well, I saw a posting about a new drug that’s out that the makers say can help with this. However, this drug comes with a side effect that makes me go, “What the fuck…?”
It’s an anti-seizure drug and there are a few of these drugs that, somehow, act on CNS pain but this on can cause permanent vision loss and even blindness! Reminds me of a new drug out for MS suffers; any amount of the drug you take and regardless to how long you take it, you will suffer permanent vision issues and even blindness. What in the name of God are these people thinking?
I know that as badly as I hurt at any given moment, I’d rather hurt than be blinded – that just doesn’t seem to be a good trade-off. With this new anti-seizure drug, you can only get it by becoming part of a special program and then only if you promise to get your eyes checked on a very regular basis. Now, my question is that if vision loss and/or blindness is a given and permanent, what the hell is going to the eye doctor going to do? Drugs like this have no business being on the market! Oh, yeah, this drug is also targeted at children 1-2 years of age with seizure issues. Okay, seizures aren’t good at all… but do you trade your eyesight – or the eyesight of your child – in the hopes that this does the job? The manufacturer even says that no one should even think about taking this drug unless every other possible solution has been tried and failed.
So the final solution is to lose your eyesight? And this stuff might not work? The group member who told us about this drug also said that someone who tried it wound up committing suicide because the drug didn’t perform as advertised and they could no longer live with all the failures they went through because of the pain. Sweet Jesus…
What’s scary is that someone actually sat back and thought of this drug, knew how it could mess someone up… and then the FDA allowed it into the market? How come someone at FDA didn’t see the data on vision loss and blindness and that it’s irreversible and say, “Oh, hell no – no way this is going on the market!”
Actually, I do know why – I used to work for one of the biggest pharmaceutical companies in the world and it know it’s about the money. Yes, they really do want to find cures and remedies for what ails us but given how fierce this business is – and how few things some companies have in their pipelines and expiring trademarks and patents, well, it’s a war for every dollar they can get their hands on, more so when you know how much it costs to even come up with drugs – R&D costs are almost 80% of any pharm company’s finances.
But, dear Lord, to put drugs on the market that makes us have to choose one bad thing over an even worst thing? The really messed up thing is that a lot of drugs are being retasked, meaning, they were created for one purpose and now being used for something else, like Lyrica, for instance; I don’t know if anyone’s come up with a drug specifically for people who suffer from CPS – and we do suffer, trust me. I mean, it’s not like they don’t know or can’t figure out where in our brains shit is fucked up – then come up with something that’ll not only work on the source of the pain but doesn’t cause a lot of other horrific side effects in the process.
But I know better. It’s not about a cure – not a lot of money in curing people, big time loot in managing whatever’s wrong with them – and the pharms companies know this. The more we have to take medication for this, the more money they make over the life of the patient. But now, with this drug I heard of, it’s just another drug out there for people who suffer as I do that’s asking them to maybe ease your pain at the risk of your eyesight.
I’d rather suffer…