My doctor (who i moved across country to become a full time patient of hers, she is a miracle) and I have discussed medication at length. She was a pharmacist before she got her M.D. So she has a bit more insight than I think mist doctors do.
I had my first major flares (presenting in my kidneys) when I was 22. I spent the next three years being poked and prodded until a friend of mine asked about my symptoms. She had been sick with lupus for nearly 20 years at that point and said my symptoms matched with hers, so my next appointment was with a rheumatologist who gave me my first diagnosis. I subsequently went to three more rheumatologists with just a list of symptoms and test results and each one gave me an independent lupus diagnosis
I was started on Plaquenil very shortly after, my doctor saying that Ina few short days my symptoms would diminish. I was over the moon happy until the truth struck me. I am one of those people who has a very bad adverse reaction to that drug. I was violently ill for three weeks, having to go get iv infusions every couple of days because of dehydration. My doc told me to wait it out, the side effects should diminish, but they never did. I was on the drug for almost a month, I didn’t have a single day that I felt even remotely better. I stopped that pill and that’s when my mom talked to her doctor (who is the one I’m seeing now) about what was going on and she told me that I need to be careful with the lupus medications because they are so harsh on your system, especially mine as I learned. I stated being seen by her when I would visit my mom, and finally moved out here.
Our goal is to keep me as comfortable as I can. I’m on daily pain pills, muscle relaxers, anti-nausea meds, anti inflammatory meds and a handful of others to be taken when needed. One of the reasons we have chosen how to treat my lupus (and fibromyalgia) is because I got sick so young, hopefully I will live for a bit longer and I don’t need medication that is toxic (to me, I know lots of people who have had great success with these meds) so I don’t want to hasten any damage to my organs, on top of what the lupus is doing. Same thing with my pain meds, I’m on a fairly low dose compared to how much pain I’m in. I take what is needed to take the edge off and can bump it up a bit if I have a big day planned or am having a particularly bad flare. I know there comes a time when your pain meds will reach critical mass where there isn’t anything stronger you can take. I’ve had friends who have gotten to that point and nothing can be done to help the pain anymore. I have never had a euphoric feeling or felt high or giddy on my meds, they just get swallowed up by the pain and keeps me from banging my head against the wall.
There my come a time when one of the lupus drugs will become viable for me, and my doctor and I will revisit it but for now, I’m ok with having more pain than my meds help because I know I won’t run out of bigger doses for a while. I wish I hadn’t been one of the people who reacts badly to those drugs but I deal with things the best way I can.