Actemra #3 and neurology #lupus #stillsdisease

I had my 3rd Actemra on Tuesday. I talked with the doctor about my plans to see my neurologist this week, and to make sure it was alright to have my infusion since I’ve been having new symptoms. I also told him that I felt I had a few weeks where I wasn’t waking up in the night with a fever, but it had started happening again. I also had a few weeks with more mild rashes compared to the feverish red rashes I usually get, but that those are back too. He told me that some people feel like Actemra lasts for 3 weeks, and he decided to give me some solu medrol for a boost.

Solu Medrol has made me feel like crap in the past, but it was with other infusion drugs, so I figured I’d give it a go to see if it helps with the fevers and stuff. So far, I feel like crap. I asked some people in the support group if Solu Medrol ever made them feel worse instead of better, but apparently I’m the only one. When I got home, I had the leg cramps, and they went on all night. My eczema has gotten pretty red and angry, and I had headaches and heart palpitations for a few days. I’m still having fevers and rashes. I’ve slept a little better the past two days, but the fevers are still waking me up.

I’ve been having pretty bad vertigo for the past week. I had an ENG in March, which didn’t show anything. I don’t think my vertigo is an ear problem. I was doing some reading online (y’know, consulting Dr. Google) and I was reading about cervical vertigo (cervical as in spine, not lady parts) and how some people with arthritis in their neck can get vertigo. It makes sense to me, because when my neck pain gets bad, that’s when I get the vertigo, and I usually have a headache with it too. I had a spell of vertigo just like this a couple summers ago. It’s awful. I can’t do anything to occupy myself. I can sort of watch TV but using the computer, drawing, and reading all make me horribly dizzy because I have to look down to do them. Wearing a neck brace makes it better, which reinforces my theory on a cervical cause. Wearing a neck brace is terribly uncomfortable, though. Also, I don’t have vertigo when I get up in the morning, probably because I’ve been resting my neck all night. I don’t really know what makes it flare, but last time it was this bad, it was also summer. Probably a coincidence. I don’t know.

I went to see my neurologist yesterday about all my weird neurological symptoms. He thinks my episodes are “too long to be seizures”, but he wants to order up a seizure sleep study to see if there is some epileptic activity in my brain. Unfortunately, and this happens a lot, he referred me to a doctor that doesn’t take my insurance. So now we have to try to figure something else out. He also talked about the blood vessels in my brain, and how the vasculitis (and aftermath “vasculopathy”) can cause changes in blood flow to certain parts of my brain, which could cause symptoms as well. As far as some of my meds making it worse, his advice was “don’t take those” which was really kind of a “no shit Sherlock”.

Kinda frustrated with all of it. I don’t want to stay overnight for some test that may or may not figure out the problem, and I don’t want another pill with a billion side effects if they happen to find something. I’m losing a lot of sleep from my symptoms, and I have medications that were helpful for other things that I can’t take anymore, so I have to deal with those symptoms too.

I keep thinking back to when one of my (ex) doctors told me she would have me back on my feet and going back to school in 6 months. That was 3 years ago, 5 treatment plans ago, 2 diagnoses ago, and a partridge in a pear tree.

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May and June stuff #lupus

I had my second Actemra on May 12th and I’m due for my next one on June 16th. It went well. I didn’t seem to get a headache like I did the first time. It has made me pretty tired though. I’m looking forward to the next one, and as always playing the waiting game. I don’t want to wish the year away but I’m antsy about getting these infusions. I want to get them done and know whether they will work or not.

My rheumatologist put me on Dexilant, which is a proton-pump inhibitor similar to prilosec/prevacid/nexium. He seemed irritated that my GI wanted to try to control my acid reflux with diet. I’m taking 60mg 4 times a day, which is a pretty big dose. The pharmacist wasn’t comfortable filling the prescription for that much and had to “file a report” and double check with the doctor. I trust my doctor over the pharmacist. So far I don’t really feel like I’m getting any relief. I’m still having reflux that makes me have asthma, still clearing my throat all day, still avoiding acidic things. It’s obnoxious and I’m tired of eating bland.

I’m going to see an opthamologist tomorrow about my dry eyes. I use restasis but I haven’t been able to wear my contacts in a long time. I feel like I have sand in my eyes. I like my glasses but I hate wearing them all the time. I just hurt so much sometimes that I can’t stand to have the weight of them on my face.

I’ve had this weird shivering problem since I got my period in April. That cycle sent me into a weird flare. At first I was cold along with it, but now I shiver when I’m not cold. I thought it could also be from stopping the Pamelor, but it’s been going on for too long now. It seems like it comes on around the same times every day.

I’ve had this odd problem for the past couple years where when I take certain pain relievers, they make me short of breath at night and I wake up over and over because I stop breathing. I was tested for sleep apnea about a year and a half ago and they didn’t find any signs of it.

Sometimes I have this breathing problem even when I don’t take those pain relievers. I’ve stopped taking them altogether, but still have “flares” of this problem. I’ve been having a problem with it all week and I don’t know why. It’s been awful. I haven’t slept much.

I went to a concert for my birthday a few weeks ago, and the light show was pretty intense. It occurred to me that I had the shivers pretty bad during the concert, and after, and just¬†generally felt like crap. I didn’t think much of it since I always feel like crap, and since I had already been dealing with the shivers.

It also occurred to me that I played video games for a couple hours on Wednesday, and that night when I went to bed I couldn’t shut my brain off. I hadn’t been playing right before bed, but I saw flashes and colors when I closed my eyes.

On Thursday night, I put it all together. I went to bed, had all my usual meds and I was listening to music. I was a little wired. Sometimes that happens to me at bedtime. I was just trying to relax. But I suddenly had this horrible feeling come over me, like I just mainlined espresso or something (which I later realized was an “aura”). I felt pretty nauseated, and the shivers started. I tried to lie down with the lights off but I was having the breathing issue that kept jerking me awake. It all felt scary so I stayed up for a while, ate some food, drank one of those vitamin drinks. I never really did sleep much after that. I was twitchy all night. I remember the whole thing. I don’t really feel like I was “altered” in any way, other than feeling a little freaked out.

Oddly enough, my cat had been waking me up in the night all week. She absolutely would not leave me alone. It’s been driving me nuts. Apparently she knows something I don’t.

I had some epileptic activity when I was a kid. I thought I had grown out of it. I didn’t have the “fall to the ground and lose consciousness” seizures that everyone thinks of when they hear “epilepsy”. I had these spells of nausea, shakiness, and feeling awful, followed by sleep. They seemed to come on right after I would start eating a meal. I wouldn’t pass out. I didn’t take medication for it.

I’m worried that I might be having seizures again. I haven’t had an EEG in a while. They don’t always pick up seizure activity, but I’d like to have another one. I haven’t been able to explain why certain pain meds affect my breathing at night, but now I know some of them can affect seizure activity, as can stress and lack of sleep.

I’ve had a couple episodes during the day since Thursday night. I felt really crappy suddenly while I was in the shower on Friday. I had that aura feeling again Friday evening, followed by nausea and the shivers. I’ve been monitoring my blood pressure and temperature when it happens, both have been normal.

I have an appointment with my neurologist that I was originally going to cancel because I felt like he couldn’t help my headaches anymore. I’m going to keep it so I can talk to him about seizures.

I’ve probably had these symptoms for a while, but I’m so used to feeling like crap, sometimes it takes me a while to put things together, or to even realize that something is a symptom. I tend to blame symptoms on other things, not realizing they could be something new. It’s hard to wonder why you feel like crap when you’re so used to it. I’m now realizing all the things that bother me that point to seizures, and I feel dumb for not realizing this stuff sooner.