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.


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.