2 weeks post-Rituxan #lupus

Well kids, I’m 2 weeks into that magical-yet-guesstimated 3-month time period it supposedly takes for 4 weeks-worth of cancer drug to put Lupus in remission. Is that a run-on sentence?

Anyhoo, I have a really bad headache, as usual. I’m still getting fevers every day. I actually think I’m in a flare of sorts. I’m not due for my “lady’s days” (as Ray Barone lovingly calls it) for at least 10 days, so I don’t think it’s a hormonal flare. Perhaps that’s TMI, but you should all know by now that this is a medical blog, and I spare no personal detail because someone might be able to relate. I’ve been waking about at about 4-5am aching everywhere, especially in my glutes. That’s a big pain spot for me. It’s fun waking up at the crack o’ dawn (literally) because your ass is cramped.

I think the brain fog is letting up a little. I haven’t been my comedic self in a while. I couldn’t find my words for months. I’m not really sure what makes it come and go. I wish I knew, because when it happens I feel like I can’t do anything. I can’t get out of my own way or do things in an order that makes any sense. When I was writing during the brain fog I just felt like it didn’t sound like me, it didn’t come out the way I wanted it to. I took a break from hat-making which is a big hobby of mine. I have a couple blogs I’ve been meaning to write. I’m hoping to have the energy to work on those things in the coming weeks.

I’m getting pretty tired of the fevers. I don’t know how I’m going to get through the summer heat and have a constant fever at the same time. I can’t even sip my coffee in the morning without triggering an episode of the sweats. It’s obnoxious. Its also very irritating to my already-irritated skin. I’ve been alternating between rx-strength ibuprofen (Duexis) and tylenol to help keep them down. They both wear off rather quickly. I do get episodes of the chills too, as anyone with a fever would, and that can be annoying as well. But it’s not as prominent as feeling too hot.

I’ve failed to include Addison’s disease and how I’ve managed it during and after my Rituxan treatment. I think I will write a separate blog about that within the next few days, so long as my brain allows it.

It doesn’t burn when I pee anymore. No one told me Rituxan makes it burn when you pee, so this is me telling you now. If you’re having that problem, it’s still a good idea to get a urine test done just to make sure, but also don’t be alarmed if it’s happening to you. Cystex is a great over-the-counter treatment for the pain. It’s an NSAID, so be careful with it.

I’m going in to the Rheumatologist on Tuesday so they can take blood to see if my white cell count is back up. I’ve stayed out of crowds for the most part, save a few trips to the store. I noticed when I’m out my throat glands get really sore. I attribute it to more of a flare than an immune reaction to being in public, though. It’s almost like my whole body aches along with it. Sometimes I wonder if the vasculitis is effecting more than just my brain.

My headaches have been a bit different lately. I’m noticing a pattern that my nasal passages swell at the same time that my headaches come on, as well as pain in my teeth and neck/back area. It’s kind of weird how I can feel that it’s all interconnected. The gland soreness in my throat goes with it sometimes, too. I’m still treating it with Duexis and Fioricet. Since giving up the Nifedipine, I think the head pounding is less intense, but the pain and frequency are the same they have always been. I’m back to having blue feet without nifedipine, but it wasn’t worth the pain I was in. While on nifedipine I felt like I could tolerate salt a little more, which is important for the Addison’s, and now I’m back to being intolerant of it, which sucks. It has made my diet so strange. I feel like I can’t eat anything that hasn’t been prepared at my house, because food is just so damn salty.

I’m trying really hard not to hurry these next few months, because I know it will only make them drag by slower. I’m not exactly anticipating a remission either, because I don’t want to be disappointed. Would be nice to kick the daily headaches, though.

One Week Post-Rituxan Completion #lupus

My doctor called me Wednesday to tell me my white blood cell count is low, and she wants to draw blood in a couple weeks to see if it’s gone back up. It’s at .9 right now (translates to 900, and normal range is within 4,500 to 10,000 cells/mcL, please correct me if I’m wrong). It wasn’t unusual for my WBC count to dip a little low while on the Benlysta, so it’s not surprising to me that the Rituxan could be doing the same. In the meantime, I can’t really spend time in crowds. My family is taking extra precautions in cleanliness when coming home from public places. I have to be sure to use Neosporin every time I get a cut, and I can’t eat uncooked fruits and vegetables.
I have some yellow spots in my throat for no reason. I’ve had it once before. They hurt. It’s probably some kind of cold virus/sore throat-type-thing that I wouldn’t normally be susceptible to if my WBC count wasn’t low. Last time, they just went away without having to go to the doctor. I’m hopeful it will clear itself up again. I don’t want to go to the doctor and be around more sick people. I feel ‘fine’ otherwise, I don’t feel like I have a cold.
I’m still running the same fevers I’ve had the past couple months. It’s been pretty obnoxious. Ibuprofen and Tylenol help, but not 100%. I can’t stand to feel the slightest bit of warm air without getting hot and sweaty. But at the same time, I’ll have a couple hours where I have the chills and I can’t get warm. I change my clothes a couple times a day to try to accommodate my body temperature.
My underarms aren’t irritated anymore for the time being. I haven’t had the burning rash on my neck anymore, either. My skin still seems kind of irritated and sensitive overall, but there is no rash. I am sun-sensitive as all people with lupus are, but I feel like it’s been more bothersome lately. I absolutely can’t stand the feeling of the sun on me. It makes me feel sick. It makes my pain so much worse.
I’m having a hard time getting through the day energy-wise. By the time the evening rolls around, I’m too tired to occupy myself, and I get really bored. I’m not much of a ‘nap person’, I always get a headache from naps, and sleeping during the day doesn’t help my fever. I try to tough it out until about 10pm so I am still sleeping my normal hours. It’s been hard because I’m losing sleep between 4am-and 7am because of headaches, body aches, or stomach aches. They like to get me up early, and by the time I can figure out what to do for it, by the time the medicine kicks in, I’m not tired enough to go back to sleep. I’m getting 5-6 hours of sleep at the most.
My urinalysis came back clean. I’m pretty happy about that. So it’s just the Rituxan causing burning when I pee. I’m actually starting to feel better regarding that as well. I’m obviously not very shy about talking about it, am I?
The headaches are still bad. My neck and back have been pretty tense too. I wish I could get a massage but the increased blood flow to the area makes my head hurt more.
My blood pressure has also been a little high. Not sure what that’s about. It’s pretty unusual for me. I’ve been waking up to heart palpitations. Whenever I eat a meal I get them too, even though I eat a low-salt/preservative-free diet. Just another bullshit symptom, I guess.
My brain is still in a terrible fog. It let up a little today, which is why I’m able to write. Yesterday was really bad. It gets so bad sometimes I feel like I can’t do anything. Everything becomes really overwhelming. Sometimes it makes me want to cry because I just feel so ‘all over the place’.
I guess I’ve just been sad lately. I’m tired of the ‘daily grind’. I’m bored as hell because I don’t usually feel well enough to occupy myself. I feel like Bill Murray in Groundhog Day. I’m just trying to hang in there until the Rituxan does its thing.

It hasn’t helped that my internet connection is shit because of the World Cup breaking internet streaming records. Yay sports, but I’ll be glad when it’s done because I miss writing and talking to people. The internet is my social life. It is for a lot of sick people. I can’t hang out at bars, or whatever people do these days, so I hang out on Facebook. It helps me feel a little more normal. As a rule, people don’t make accommodations for me so I can hang out with them. My health gets in the way of plans and no one really offers to do activities that would be easier for me, they just leave me out instead out of laziness. Maybe social media seems trivial or irritating to other people, but I’d be sad without it. I can still talk to people and not have to worry about ‘making plans’ or whatever. I’m not afraid to admit I’m lonely, but I’m also not shy about pointing out that people suck, and most of the time they disappoint me, and that dealing with being lonely is easier than disappointment. It’s been a conflicting position to be in.

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.