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.


The Weekend

It’s been 5 days since my infusion. I’m due in for the next one on Thursday. I’m so tired. I spent a couple hours today feeling really dizzy. The past few days have been especially migrainous. I’ve had a lot of pain in my neck and upper back. It makes me feel like I can’t move sometimes. Friday was my birthday. I wanted to go out but I had to take it easy because I had a really bad headache/neck ache/ back ache. I couldn’t even imagine getting in the car. I’m hoping to make it to the beach tomorrow, though.

I’ve been running random fevers for a couple months. I have to take ibuprofen before I go to bed every night so I don’t wake up sweaty and hot. Today I seem to be running even warmer. I woke up with a raging sore throat this morning. I really don’t think I have a cold, though. I think my immune system is just kicking my ass. Sometimes the lupus makes me have random sore throats and fevers. It seems like it’s all happening at once right now.

As for Rituxan side effects, I think mostly I’m just tired and achy. I did have a couple days where I was nauseated and my stomach was upset. I’ve had a lot of headaches but I never really know which thing is causing them. I think my muscles are still cramping from the Solu Medrol.

The dizzy spell I had today was a bit worrisome. I felt like the room was spinning, and I just absolutely could not focus on anything. I’m still feeling it a little. I’ve been awake since 5:30am because of the sore throat so I’m sure that isn’t helping all the symptoms I’m having right now. I’m not much of a nap-taker. When I lie down during the middle of the day I get really bad heart palpitations for some reason (and no, it’s not POTS. People ask me that all the time) If I do happen to fall asleep at all I always wake up with a headache, so between those two things, I don’t even bother trying to nap.

Other than that, I’m not really feeling any serious side effects. I have 3 more infusions, and I might feel more side effects after I complete them. I really want to get them over and done with, partly because I’m worried about the vasculitis, and partly because I really want to start feeling better.

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.


SPECT scan and Rituxan update #lupus

After much waiting, worrying, and being jerked around by insurance, yesterday I finally got the SPECT scan done on my brain. I had it done at Cedars-Sinai, which is a very prestigious, incredibly messy and inconvenient hospital. If you’re facebook friends with me, you probably saw my post “If Godzilla ate some bricks and mortar and threw up a hospital, it would be Cedars”. The streets are narrow, the traffic is bad, and the parking structures are confusing as hell. We ended up parking in doctor parking by accident so the parking structure wouldn’t accept validation from the hospital.

I already had a headache when I left the house. It was worse when I got there, and about to get even worse. After they entered all my patient information into the computer and I officially existed, the technician came to get me in the waiting room. He took me back to a little room with a bed and gave me the contrast injection. I had to lay quiet in the dark for about 30 minutes before the scan was performed. He kept telling me that I wasn’t allowed to do anything stimulating, no reading, talking or “playing with my phone” (I’m not a ‘play with your phone’ person anyway) so I just lie there in the dark, bored and uncomfortable, and my headache starts to get worse.

After lying in the dark, it was time for the scan. Lying flat on my back always makes my headaches really bad, and they also had to strap my head in, which didn’t help either. I felt like I was wearing a hat that was too small. The scan took about 40 minutes, and the pain I was in was absolutely awful. My mom told me when I was at about the half-way mark. It was weird because the technician just strapped me in and pushed the *on* button and left the room for the entire scan. The last 10 minutes or so were pretty difficult to get through. My head hurt so bad. I just tried to lie there and close my eyes, and pretend I was somewhere else. It worked for most of the scan, but I had a couple moments where the pain made me want to panic.

When the technician finally wandered back in the room, he unstrapped me and told me to sit up slowly. He asked me if I was dizzy. I told him I wasn’t, that I had a really bad headache all day, and that’s why I was having the scan done. He had been a bit of a smart ass to me and my mom earlier, but I think when he realized I was in pain, he chilled out a bit.

On the headache pain scale of 1-10, my pain was probably a 9.5. It was just under the worst headache pain I’ve ever had. When it was time to leave, I needed to use the restroom first. The ladies’ bathroom was occupied for a really long time, so I went in the men’s room. I was just so pissed about the whole experience, I didn’t really care. They were single-person bathrooms anyway.

On the way home I took imitrex for my headache. I don’t like taking it because it usually causes me to have a worse headache the next day, but I was in a lot of pain and I just couldn’t deal with it anymore. So far today I don’t really have a headache, at least not like I did. I was aggravated the whole way home, and really exhausted. I probably could have taken medicine before the scan, but I was afraid my results wouldn’t be accurate. As terrible as it was, I’m hoping that the reason for the headache pain showed up on the scan.  

If you’re going in for a SPECT scan, don’t worry. Your experience will probably be better than mine. The only reason my experience was crappy is because I already had a headache when I got there. Overall, it’s a relatively easy procedure and I probably wouldn’t have minded it at all, had I not been in pain.

I’m going to my rheumatologist for my first Rituxan infusion on Tuesday. I will probably learn the results of the scan then. I’m getting the Rituxan treatments regardless of what the scan says, but it’s good to know the extent of the vasculitis in my brain.

My Rituxan infusions are going to be once a week for four weeks, and each infusion will take about four hours. According to my RN, the side effects won’t be much different from the Benlysta. I hope he’s right, because compared to other drugs, Benlysta side effects really weren’t that bad. I know the Rituxan infusions will be harder since they are four hours long, with an hour and a half drive each way tacked on. It’s only for four weeks, though. After that, I won’t have to have infusions for hopefully a long time, if the Rituxan works.


The #Rituxan green light. #lupus

On Monday, I heard from the Lupus expert doctor. My blood work was not indicative of vascular inflammation in my brain, but at that point it didn’t necessarily mean there wasn’t any at all. There just wasn’t enough to show up in the blood. He wanted me to go ahead and schedule a spinal tap through my rheumatologist. Obviously I wasn’t stoked on the idea. If you’ve read my blog for a while, you may have seen a post where I described an experience I had with a botched spinal tap. I won’t get into it, but my back still hurts from it, and that was in 2009.

I got a call today from my rheumatologist. She compared notes with the Lupus expert doctor and they both agreed that there was enough evidence that I have CNS Lupus (Central nervous system-brain and spine) and that we are going forward with Rituxan infusions. That means I don’t have to have the spinal tap done.

Edit: I understand now that my rheumatologist believes my blood test was indicative of vascular inflammation in the brain.

My rheumatologist managed to get the SPECT scan approved. For some reason, out of thin air, there wasn’t a problem anymore with the insurance. She said that since it’s a hospital procedure that I don’t even need approval from the insurance. After all that fighting with the insurance, just like that. Strange.

I’m not entirely sure what Rituxan treatments for Lupus entails. I know the infusion itself is longer compared to the Benlysta infusion which was about an hour and a half. I know it “crosses the blood/brain barrier” and can be helpful in brain inflammation, and I also know it carries a risk of brain infection. All immunosuppressants carry a risk of infection to some degree. I guess I’ll find out more details when I see my rheumatologist. I really don’t think she would put me on a medicine if she thought the risks outweighed the benefits.

I’ve been on a calcium-channel blocker (nifedipine) for the Raynaud’s. My toes get so blue and cold that I’ve been unable to wear sandals because the lack of warmth hurts too much. I also haven’t been able to go to bed without socks because they get so cold it keeps me awake. The Lupus doctor thought it might help with my headaches too.

My experience with it has been interesting. I take 10mg in the morning and again at night. If I forget to take a dose, the next dose I take will give me a pretty good headache. But it seems like if I remember to take it as prescribed, it seems like it helps my headaches to a point. There are still some times when it gives me a headache anyway, though. It gives me heart palpitations for the first 20 minutes or so, but they do go away. It seems like my toes are a bit warmer. I could stand wearing sandals the other day. Granted it was 90 degrees out, but still.

All in all, I know Rituxan is a somewhat risky “big guns” medication, but the Benlysta wasn’t helping me. I was going to LA every month for treatments and still feeling like an achy tired old fart that gets migraines every day. I’m ready to move on and try something new, and crossing my fingers that we’re on the right path now.