I had my Benlysta on the 3rd. I was sick the last week of February, so I had to push my treatment off by a week. I was flaring before the 3rd, not just more pain, but the red face/chest rash, fatigue, heat sensitivity, and the headaches were really, really bad. I remember watching the Olympics and there wasn’t a night during it that I didn’t have a headache. It was pretty terrible.
I wonder if I would feel sexier if I started calling my lupus rash my ‘leopard spots’ or something.
After I had the Benlysta, I was still flaring. About a week and a half later I called my doctor to tell her about it, and she wrote me an rx for Prednisone, and some vicodin to try since my other pain relievers seem to cause sleep apnea. I’ve been taking a break from the tramadol, because it just seems to effect my breathing too much. I don’t seem to have a problem with vicodin yet, but I’m only taking a small amount. I don’t like taking it, but the pain has been too ridiculous. I can’t just do nothing.
I hate prednisone. They should just call it predni-crack.
My doctor talks too fast. She’s in such a damn hurry to get me off the phone that sometimes after she hangs up I realize I don’t quite understand everything she said. I have a hard time concentrating on phone conversations for some reason anyway, but her eagerness to talk fast and not let me get a question in without interrupting her makes things difficult and confusing sometimes.
I was supposed to get some cognitive testing because my focus and memory have given me a hard time, for a long time. That particular doctor doesn’t take my insurance, so I will be seeking some testing from somewhere else at some point. I heard the testing is about 4 hours long. Not stoked about it, but I’d like to see if I can get some help, too. It has basically impaired my ability to have phone conversations beyond the “Hi how are you” and I have a really hard time learning new things, and enjoying books. I miss not being in a brain fog. I miss books. I miss learning things with ease and feeling proud about it. I miss when all these things didn’t feel like a miserable chore. I even miss school.
I thought over the phone she said I should take prednisone for 3 days. But when I picked it up, it was written for 30. So in retrospect, I wasn’t sure if she said 3 or 30. I called her Monday for clarification, and she didn’t get back to me til Tuesday. Her words were “4 or 5 or 6 days.”
I guess I was confused because she didn’t know how long I should be on it, either.
As you might already know, I have an Adrenal insufficiency (Addison’s disease) and I can’t really fuck around with steroids too much. My adrenals don’t produce enough cortisol on their own, and taking prednisone regularly would cause them to ‘shut off’ and produce even less when I stopped the prednisone. It’s like they get used to the steroid being there so they stop producing. The last thing I need right now is an adrenal crisis. Most ERs don’t even know how to treat one.
My Endocrinologist said a short treatment with prednisone would be safe, that’s why I was so worried about getting ahold of my rheumatologist to clarify.
I’m in the market for another rheumatologist. One that gives me the time of day and isn’t so wishy washy in making decisions.
So I took the full dose of pred (10mg) for 4 days, and I’ve decided to taper down myself rather than just stopping it ‘cold turkey.’ I feel moody and jittery, and my heart has been pounding on and off all day. I still feel like shit from the Lupus flare, and now I have the added side-effects of prednisone. I really don’t feel like it helped the symptoms. My face is still red. I had a day where I didn’t go to bed with a headache, but it was only one. I’m tired, sore, and annoyed.
My rheumatologist wants to stop the Benlysta. That means I’ll probably switch to Rituxan at some point, or perhaps regress to Methotrexate injections. There has been talk for at least 6+ months about “whether or not the Benlysta is helping” and it’s pretty obvious that it isn’t. It was talked up to me like some magical miracle drug and I really don’t feel I’ve “gotten my life back” as I was told I would. I’m waiting on getting a SPECT scan to check for vasculitis. The insurance company has been a dick about that. My neurologist has been pretty awesome in dealing with them. He took my case to a medical board, to deem it medically necessary. In the mean time though, more than a month has gone by, and I’m still sitting here with really bad headaches, every day.
I tried some herbal things for my headaches. You’ll know I’m desperate when I start turning to plants for help, because I’m terribly skeptical when it comes to herbal things. I see it nothing more than a placebo effect for ailments that are easily remedied by something over-the-counter. It doesn’t help anyone in any real kind of pain, not in the chronic illness sense. It can still damage your liver, too. Just because it comes from a leaf doesn’t mean it’s safe.
That being said, I tried a Feverfew/B2 mixture called migrelief, and it actually helped. Like, immediately, and it helped a lot. The problem with it were the side effects. It gave me really bad insomnia, like ‘up all night and wired’ insomnia. It also made me have a foul taste in my mouth that was so bad I had to stop taking it.
My neurologist had recommended Butterbur, and I tried the feverfew mix while I was waiting for the Butterbur to come in the mail, because they are from the same plant family. You have to buy butterbur that is free of alkaloids so you don’t get liver damage(“PA free”). I started the butterbur as soon as I got it, and got no bad side effects, other than burping, but got absolutely no relief, either.
I have an appointment with another rheumatologist next week. My spect scan should be figured out by the end of March. My next appointment with my current rheumatologist is at the beginning of April. I won’t be getting any infusions that day, but probably be talking about what to do next. I’m hopeful that things are moving in the right direction, but a lot of the time I feel like when I get to a conclusion, it ends up being “Toad” instead of “the Princess”, and I’m off to the next castle to battle lava, Bowser, and those fireball things that swing around. Hopefully I’ll find a 1up.