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.

visit to new rheumatologist #lupus

I spent the day in Los Angeles on Tuesday. I first visited my cardiologist to check in with him about my blood pressure. He raised the dose of bp medication and we’ll go from there. It was a pretty short appointment.

From there I went to see a new rheumatologist. I’ve seen him once before, but I’m hoping he will take me on as a new patient. I brought him up-to-date with my current treatments and problems. He seemed surprised that the Rituxan hasn’t improved anything yet. Even though my SPECT scan shows evidence of severe vasculitis in my brain, he seems to be unsure what the cause is. My other doctor didn’t do a spinal tap, which would ultimately show what’s going on in my brain. My new doctor ordered one, and I’m having it done tomorrow morning. He is looking for lupus activity, but also a couple other things, like a virus or fungal infection. He said that someone with a compromised immune system like mine could be susceptible to infections like that. There was an undertone of irritation from the doctor about how my other doctor has been handing everything. He also talked about doing an experiment with Solu Medrol, likening it to the “Pepsi Challenge”. I would take a gram of Solu Medrol every day for 3 days and if I respond to it, then we’ll know it’s the lupus causing my headaches.

Obviously, I’m not looking forward to getting a spinal tap done. I had a bad one done about 5 years ago. But this time, it won’t be at a local hospital (which may as well be “Bob’s spinal taps, hair care, and tire center”) I’m getting it done at Cedars-Sinai, and it will be guided by ultrasound with a pediatric needle. They were originally going to make me wait until next Thursday to get it done, but the doctor called the hospital to get me in sooner. I’d much rather get it over with than think about it for another week.

I found out my other rheumatologist was billing my insurance for more time than I was at the office, which is one of the reasons why I wanted to switch. Sometimes while I was there for an infusion, I wouldn’t even get to talk to her, and I don’t think it’s good practice for her to bill my insurance as if she spent time with me. Some of my infusions were over in 2 and 1/2 hours, and she billed the insurance for 4 hours. It makes me question the legitimacy of the co-pays I owe. They would never let me pay the co-pays while I was at the office, it was more like a “we’ll send you a bill” kinda thing. And lately, I have an outstanding balance and they are threatening sending me to collections. My information has been given to receive statements a hundred times, but I still haven’t gotten anything, and no one has been willing to explain why. It’s all a bunch of horse shit to me.

Last time I was at her office, she was having a meeting in her tiny waiting room with a couple other ladies about how to attract more “high-end patients”. I was pretty insulted. I didn’t know the Hippocratic Oath stated to “only treat rich sick people” somewhere.

So those two incidents, along with the fact that I’m not doing better and that she seems unwilling to get to the bottom of it, I decided I need to look for care elsewhere. I hope I chose the right path.

My neurologist is giving me nortriptyline for my headaches. I’m not excited about taking it since it’s an antidepressant, but from what I’ve read, it has been really helpful for people with migraines, and also helps people sleep too. I have a migraine almost every day. I sleep for shit, too. Both of these things are keeping me from having a life beyond the couch.

The heart palpitations are still bad, and I have an appointment with my Endocrinologist late September. I’m gonna have him check my thyroid.

Other than that, same old shit. Still in pain, still not sleeping, still have no social life.

That’s it for now, I guess.

Rituxan 3 and 4

I had my final dose of Rituxan last Thursday. They put the IV in my forearm. On the 3rd infusion I had them put the IV in my hand, which was a decent location as well. For my first 2 infusions it was in my wrist and the second time I bled under the skin for some reason.

So far, my main side effects have been fatigue and fevers, and some burning skin irritations. I had this rash on my neck that was red and felt chapped, and burned like a sunburn. I was putting cortisone cream on it for a few days. It’s gone now. I’ve also had some stinging underneath my arms, which actually isn’t uncommon for me. I’ve had irritation under there that has kept me from wearing certain t-shirts since I was about 16. It seems like the Rituxan temporarily made it worse. Luckily, since I was already used to the problem, I have a good selection of ‘flutter sleeve’ shirts and other baggy shirts to wear.

I’ve also had burning urination, and both the doctor and infusion nurse said that Rituxan could cause that, but I gave a urine sample anyway. I’ve never had a problem with that before, so it would make sense that the sudden onset is from the Rituxan, but I just wanted them to make sure. I’ve been taking Cystex, which is an NSAID that helps with the burning. It works great and I recommend trying it if you can take NSAIDs.

Last night I had some pretty bad muscle cramps in my back and in my ass. I attributed that mostly to electrolyte imbalance (it’s easy to forget sometimes I have adrenal disease, too) but I don’t know for sure if that’s the right call. Ass cramps are pretty painful and usually keep me awake. The back pain woke me up at some rude hour, and even though I was half awake I remember it being pretty bad. Before I went to bed I had some electrolyte supplements and I ate a banana for the potassium. I drink a lot of water, probably more than the average person, so I thought maybe I lost too many electrolytes. But there’s a good chance the Rituxan was to blame, too.

I’ve been in the worst brain fog. It started before the Rituxan, but I’m sure now the Rituxan could be making that worse too. That’s why I didn’t write for my 3rd infusion. Writing usually comes easy to me but I haven’t been able to ‘find my words’ lately. I catch myself thinking in pictures and wondering how the f*** to put it on paper. It’s not a pleasant feeling.

Even though I’m in the throes of brain fog, I did manage to start up a music blog. If you like alt/rock/folk/indie you can check it out here. I like to write about bands that people don’t seem to know, so maybe you’ll find some new music there.

As far as treatment goes, I just play the waiting game now. My doctor said it could take up to 3 months to see any changes.  I won’t repeat a brain scan for about a year she said. I guess the ultimate goal is to get my immune system to stop attacking the blood vessels in my brain, thus lowering the inflammation. I’m still having headaches every day.

That reminds me, I stopped taking the nifedipine to treat the Raynaud’s. It was helping my cold blue feet but making my headaches so much worse, and I really don’t need that. I really liked not having cold blue feet but it was just not worth the amount of pain the headaches were causing. So I guess I’m back to wearing socks and shoes all the time. No sandals for me unless it’s really hot outside. I’ve actually been wearing Sanuks, which are the best of both worlds. Not very supportive, though.

Well, that’s it I guess. I’m tired, my ass hurts, and it burns when I pee. Other than that, I’m fabulous.

Rituxan # 2 #lupus

I received my second Rituxan infusion yesterday. I didn’t get Solu Medrol with it, which was nice because the leg and back cramps from it are pretty painful, especially while sitting for a long infusion and then sitting in the car for an hour and a half to get home. I haven’t had a lot of ridiculous side effects so far, mostly just annoyances. I’ve had some insomnia, my skin gets irritated easily (probably the lupus, doesn’t look like an allergy) I’ve had some trouble with heart palpitations again, and my stomach was a little upset. I’m tired, too, but that’s a give-in. Other than that, it hasn’t been too debilitating so far.

This infusion was about an hour shorter, which was nice. I attribute that to skipping the Solu Medrol, since that’s a separate drip. Knowing I have to sit there for 3-4 hours can be daunting. I sometimes feel like I am too tired to occupy myself, and I usually have pain somewhere, which can make it really hard to concentrate on anything.

I had the infusion nurse put the IV in my wrist again. It was sore this time. I probably hadn’t healed from the last infusion yet. As long as I sat still it was fine but when I moved it stung a little. I thought about having him move the needle, but that just meant getting poked again. He did adjust it a little. Next week I think I’ll have him put it in the other arm, or possibly in my hand.

2 down, 2 to go. So far so good.


Rituxan #1 and vasculitis update #lupus

I had my first Rituxan treatment yesterday. I had to be there at 10, which meant leaving the house around 8. Getting up early is really hard on me. I was hooked up to the IV for about 4 hours. It’s a slower drip than the Benlysta because it’s a riskier drug, and they slow it down to lessen the side effects. Sitting there for that long, and adding in the drive to LA which is an hour and 15 minutes each way was painful. My back and neck are sore from it right now. I have to do it again next Thursday.


I had them put the IV in my wrist again. I knew I was going to have to get up to go to the bathroom eventually, and when they put an IV in the bend of your elbow, it basically renders that arm useless, and I didn’t feel like tackling trying to pee without the use of one arm. And you don’t want to accidentally bend your elbow with a needle in it. Luckily, I have really good veins, so they always only have to stick me once.

I felt OK while the medicine was going in. My throat got a little dry. I was a little tired. They gave me solu-medrol as a pre-med and it made my back and legs hurt pretty badly, because it lowers your potassium and makes muscles crampy. It got pretty hard to sit there after a while. I brought books, crochet, video games, and music. I had a hard time relaxing at the start of the treatment because I knew I was going to sit there a long time, and I knew it was going to make me hurt. My back is still hurting from it now. Once I finally settled in, I played a nice long game of Mario Party.

The drive home sucked because of the pain in my legs and back from the solu-medrol. I had the pain for most of the night, actually. When I was getting the Benlysta, they gave me the solu-medrol with it at first too, but the pain from it was so bad I asked them to stop. Since Rituxan is a new drug and I am only having 4 treatments as apposed to once-a-month-forever, I’m putting up with the solu-medrol to be safe. It’s supposed to help prevent adverse reactions to infusion meds.

Today I’m not feeling too many side effects. It almost feels the same as the Benlysta. I’m tired, a little light-headed, a bit headachey, but so far that’s been it(aside from the solu-medrol cramps). Rituxan may have cumulative side effects, meaning I might feel worse after more infusions. I may spend a while after the infusions are complete feeling really tired.

On Monday I received the news that the SPECT scan showed that I have severe vasculitis in the small blood vessels in my brain. I’m not surprised, because I’ve had headaches every day for years, and most of the time, they’re really bad. They’ve kept me from doing a lot of things, from going to the movies, to exercising, and even just wearing a pony tail. It has made doing just about anything pretty difficult. When they’re bad, the only thing I can really do is curl up on the couch or lie in bed. The different medicines I’ve tried for it have never really helped. I’ve been living like this for a while.

The Rituxan is supposed to take care of the vasculitis, and hopefully put my lupus in remission. Vasculitis is a pretty serious diagnosis. In my case, I have cerebral vasculitis, which is indicative of CNS Lupus. The Benlysta treatments I was receiving before do not help CNS lupus, which is why I wasn’t feeling better while on it. Vasculitis can cause complications such as stroke, aneurysms, ischemic attack, and seizures. Needless to say I am relieved to have a diagnosis and already be in the process of receiving treatment. I feel like I’ve been waiting such a long time.


Leg Cramps

So yesterday I was talking about how every time I get the Benlysta infusions, I get leg cramps. Well, I realized that it’s actually the steroids I receive with the Benlysta that cramp up my legs. I get Solumedrol, which I read last night that it depleats your potassium and in turn causes the leg cramps. So last night, I drank some juice before bed that has potassium in it (Silk fruit and protein, yum, be careful of the sugar though), and boom, no more leg cramps.