Well that was fast. I’m off the Plaquenil (hydroxychloroquine) for good. I’m so weak, dizzy, and bloated. I don’t think it’s the drug’s fault, honestly, but boy does it amplify my IBS pain and bloat by like a bajillion.
I can’t even. My abdomen is so tender to the touch. There isn’t room for these behemoth-like intestines.
I messaged my doctor who reminded me we didn’t even have confirmation that this (waves at myself from head to toe) is autoimmune. He agreed I should stop taking the Plaquenil.
Gah! It’s so frustrating not knowing how to fix this.
There are a couple of bright sides to this story, though. First, Dr. Rheumatologist called in a prescription for a steroid dose pack. Praise jeebus!
I’ve been trying not to beg—in case they were a terribly ill-advised treatment—but I’m desperate.
I don’t know what’s causing these additional symptoms, but I do know perfectly well my body needs a little assistance to even have a chance to repair what’s wrecked.
In the past, palliative care would give me a short course of ‘roids. However, I don’t have palliative care here in Edwardsville, which means quality of life often takes a backseat to diagnosis.
I get it and I respect it, but it does present some challenges for a woman 7 years out from a brain tumor diagnosis. Like hooray, I’m alive. But also? It’d be nice if I could, you know, get out of bed.
Second bright side: I feel so awful this evening that it’s clearer how much better I was doing eating smaller portions more frequently, meditating daily, and not having to fuck around with health insurance.
(Things went sideways with Dan’s Medicaid today, but I don’t feel like explaining in detail. Suffice it to say we had enough on our plates already. And that extra $60 we need for his meds now wasn’t exactly budgeted.)
Anyway, here’s hoping the steroids give my body the boost it needs. It’s been trying way too hard for way too long.
I’ve been thoroughly enjoying not having any doctor appointments to blog about this month, but the medical mystery of whether or not I have some kind of chemo-induced lupus still looms.
I started back on the Plaquenil (hydroxychloroquine) last night. I’m not feeling a hundred percent—more on that in a second—but I think things are good enough that I can track whether the medicine is going to be helpful.
Plus, when I stopped taking the Plaquenil, I told the nurse practitioner (and myself) that I would start up again when I felt better. My next appointment with rheumatology is at the end of October, so given how long this drug might need to take effect, It seems like a good idea to give it another try now rather than later.
I was feeling better after the anxiety work, and I started reintroducing some of my favorite foods to test my IBS. Though I haven’t endured my worst IBS-C ever the past couple of weeks, constipation has definitely moved back up the problematic scale to affect my overall quality of life.
Over the weekend I had a buffalo chicken pizza. It tasted glorious but had jalapenos on it. I removed the jalapenos originally when placing the online order but screwed up another part of the order, deleted the wrong pizza on accident, and then forgot to remove the peppers when I added my pizza back. (Honestly, the buffalo sauce was probably too much on its own.)
No big deal, right? Ha!
The inflammatory effects were immediate. I picked the jalapenos off subsequent slices, but the damage was done.
Not that one single misstep undid me. The weather was unstable. I was already feeling worse, which kicked off a series of “eat this to distract yourself from the pain” cues in my brain. I knew what was happening, but my lizard brain wasn’t interested in the pedantic warnings of my prefrontal cortex.
At least I understand the process of the habit now, thanks to Unwinding Anxiety.
Anyway, it’s pumpkin spice latte season, so I was off my sleep game too, consuming caffeine like it doesn’t keep me on the edge of awake all night.
A forty-four year old woman can be absolutely certain that something is the right thing to do and still pout and whine about it. Ask me how I know.
My oncologist called and reminded me there was that matter of the nodule on my lung that showed up in the last CT scan. With all the lupus stuff preoccupying my tumored brain, I’d forgotten about it. He didn’t though.
He recommended a biopsy, reasoning that if it is cancer, it’d be so easy to treat right now. A little zap and voila! Early detection and all that jazz.
I know he is absolutely right. But I also know my body’s proclivity for racking up procedures that don’t help identify a damn thing.
He’s going to put in the referral.
Damn it.
When I got home from the rheumatologist’s appointment Wednesday, I was so buoyed too. “I’m taking all of August off from doctor shit,” I told Dan.
Fucking hell.
Dr. Oncologist also sent my lymph tissue off to Cleveland Clinic for a second opinion, which was pretty cool of him. They agree the lymphadenopathy is not cancer, and a couple of other tests also came back negative.
So my lupus theory holds for now, and I’m well aware that lupus can cause lung issues too. In light of that: no vape, only edibles. I get better pain relief from edibles anyway.
That reminds me. While we were talking, Dr. Oncologist asked me again if I’d ever been told I have an autoimmune disease. Heh. So I told him about the lupus not being confirmed or ruled out and about the hydroxychloroquine, and he seemed to think that was a good plan.
I’ve been told numerous times over the course of many years that “something autoimmune is going on” but no one can ever diagnose what exactly it is. I’m trying not to get all twitchy about it while I’m typing this.
“Maybe you’ll get a disease named after you,” Dan joked.
I’ve been thinking about that and have decided if I could name a new disease, I’d give it some attitude. Like “fuck this noise disease” or something.
Anyway, that sound means it’s time to ask for financial help again. Small donations of $10 and/or sharing the link are always helpful.
I have to channel all this hope somewhere, so I’ve been reading and contemplating lupus the last 36 hours or so since my appointment with the rheumatologist.
I have been muddling over the best way to characterize what’s going on with me healthwise. I want to talk about it in the easiest way without mischaracterizing the details for new visitors.
So here’s the deal. I’m going to call this collection of progressively horrible symptoms I’ve been experiencing for the last couple of years lupus with an asterisk.
The asterisk meaning the diagnosis isn’t official. It’s just that my particular brand of autoimmune dysfunction aligns best with that diagnosis for now, and I don’t want to mess with the caveats every time I blog.
I’ll just link back to this page, and let people read what they find useful. Of course I understand this Dx could change at anytime, but someone who lands here through a search, for example, might benefit from some context.
Drug-induced Lupus
But for Temodar, I don’t think I’d be contemplating a lupus diagnosis at all. I believe that chemotherapy further freaked out my immune system when the cancer already had it confused.
Just based on anecdotal family history, I think I was genetically predisposed to autoimmune shenanigans.
There’s such a thing as drug-induced lupus, and that makes the most sense to me. I don’t have any scientific proof of that claim; it’s just my best working theory. I’m not a medical professional, but I’m a professional chronic illness patient from way back.
In 2017, I had an ER-level reaction to the increased dose of Temodar that was supposed to kick off adjuvant chemotherapy, and a surprise reaction to sulfa antibiotics shortly thereafter. It just feels like lupus is very likely, you dig?
“Whenever possible, people with lupus should avoid taking sulfa-containing antibiotics (or sulfonamides) as these drugs can exacerbate lupus symptoms in some individuals. People with lupus are also more likely to be allergic to sulfonamides compared to the general population.”
In addition to the sulfa reaction, I’ve had various reactions to weird things that feel like allergies. Sneezing and the usual allergic malaise have come my way after being in contact with previously unremarkable stuff.
“Allergic disorders commonly occur in patients with systemic lupus erythematosus (SLE) and allergies to some drugs may occasionally be related to disease flares.”
Man, everything I eat makes me hurt now. I’ve been blogging about constipation and diarrhea for a while, too. But also there’s bloating, swelling, and constant abdominal pain I don’t detail much because I don’t know what to say. I’m miserable and too exhausted by it to elaborate.
Turns out gut stuff is not uncommon for people with lupus:
“A person living with lupus may develop intestinal issues, such as IBS. IBS can cause similar symptoms to gastroenteritis, such as abdominal pain and diarrhea.”
With the symptoms of cancer and the side effects of associated treatment, it’s hard to know what’s what. Here are some other things I experience that may or may not be lupus symptoms:
So that’s why I think I have lupus and the rheumatologist is starting me on Plaquenil (hydroxychloroquine).
When I try to make sense of why I feel so terrible at a potentially early stage of the autoimmune disease, I rationalize that my baseline was utter shit to begin with. Brain tumors are problematic like that. With that POV, lupus makes a fair bit of sense.
Still, there are symptoms I don’t have—like fever, joint inflammation, and the characteristic butterfly rash—that would help make this diagnosis easier.
Anyway, I don’t care if randos think I’m a hypochondriac, but I want people looking here for potential answers to their own medical mysteries to have a factual understanding of mine.
Yesterday’s appointment with the rheumatologist went so much better than I was expecting.
“Did you see your lab results?” the NP asked as a way of determining just how much she needed to explain.
“I looked at them,” I said deflated. “From what I understand, they are inconclusive.”
“Yes and no.” She explained my results as essentially this: they can’t confirm a diagnosis of lupus, but they also can’t rule it out.
The NP says “It’s always lupus” btw.
HOWEVER, there is clearly some funky autoimmune stuff happening, and she and the doctor wondered how I felt about trying Plaquenil (hydroxychloroquine).
My mood changed immediately. I turned to Dan and said, “Hey! Maybe I can cure some COVID while I’m at it.” And that started a whole bit about Ivermectin and injecting bleach.
She remained very professional as we did our shtick, coping with humor. While acknowledging how absurd those treatments were, she confirmed what we already knew: 45* had no business distributing medical advice.
But this is not about convicted felons or pandemics.
This is about hope.
I didn’t get the steroids I thought I wanted, but I have something to try, y’all! I’m ecstatic.
And instead of hedging about whether this drug will work (it’s a slow burn and might take months to help if it’s going to) and protecting myself with pessimism, I’m going to shoot that hope shit straight into my veins.
I need this. I need to live in the joy of this present moment instead of wondering about the future. (See? Meditation is working.)
Who cares if the med doesn’t work? What I need most now is the possibility that I can feel better. There are things to try and doctors to help me try them.
As my spoonie friend Dawn taught me years ago: carpe diem, bitches. In this moment, I feel better. I’m going to notice it.
When the doctor came in and asked how I felt about giving Plaquenil a try, I think I even used the word “excited.” Not only am I optimistic right now, but no one mentioned peeing in a cup, and I don’t go back to rheumatology until the end of October.
Yee-freaking-haw!
Somebody get Howard Dean in here to help me celebrate.
So, as the rheumatologist explained it, lupus is a complicated diagnosis and the criteria were redetermined in the last five years or so. Swollen lymph nodes are no longer considered.
The way autoimmune things progress over time, though, I may one day qualify for it—or another diagnosis.
In the meantime, hydroxychloroquine could help me feel better and slow the progression of whatever this is.
The first set of Avise lab results (checking for lupus) is negative with caveats. My 1:640 speckled ANA persists, and there’s a positive result on a C3 complement component, but I don’t know what that means.
On a scale of -5 to +5 (with -5 being “you’re fine” and +5 being “dude, that’s so much lupus”) I am a -.4. just barely to the negative side of the section of the lupus results graph labeled “indeterminate.”
Stares at camera in unamused side eye.
Look, I don’t want to have lupus, but I do want to know how to fix this, and I’m a little worried I’m going down the road to Nowheresville all over again. This diagnosis crap is forever taking.
My worrying about inconclusive results is probably premature. There are outstanding tests from other labs to come back. Plus, the follow-up with the rheumatologist—who knows way more about what this all means than I do. But I know my body historically likes to cause undetectable problems for me.
How much longer is this going to go on? How many more useless tests and procedures and doctors’ visits are in my future?
I know it’s better for me not to imagine worst-case scenarios. I also accept that I’m pretty bad at staying focused on the present when Right Now is a giant, immotile shit show full of chronic pain and fatigue and swollen lymph nodes.
At least this time around I have results and visible symptoms that doctors can’t ignore. I am being taken at my word, too, which I thought was all I wanted. I want relief too though.
If it’s not lupus, I will genuinely be surprised. Wednesday day I had another CT scan from my neck to my nethers. And there’s a lot of stuff messed up in there, but the thing that has me guessing SLE (lupus) is that there’s a new nodule on my lung.
Now, the CT report says “suspicious” for malignancy, but it was ordered by an oncologist at a cancer center, and I think we’ve already discussed how when you’re a hammer everything’s a nail. I probably dismissed a lot of relevant symptoms myself because “brain tumor” and “chemo.”
But here I am, trying to be a whole-ass episode of House.
Maybe I should be more concerned about cancer again, but I’m desensitized to cancer scares like a “conservative” American is desensitized to gun violence. I’m honestly more concerned someone is going to suggest another biopsy, and I will break down in tears at the thought of paying for it.
By the way, I am not strong anymore, and I don’t have to be or want to be. This has been going on too damn long for me to absorb any of that nonsense. So if you’re thinking it, keep it to yourself. I might go emotionally all asplody without warning.
I have an appointment next week with a nurse practitioner at the rheumatology place, where no doubt I’ll be giving up some blood. Maybe they’ll know something no one else does.
Oh, and I seem to have inherited my Mom’s diverticulosis of the colon. Not a major concern right now, but still: annoying-guh.
My list of symptoms is too long to list in full, but the most interesting and bothersome to me are: symmetrical sun-induced rashes on my elbow bends and shins, giant lymph nodes, heat sensitivity, random allergies to new things, and the ever-present muscle pain and weakness.
Basically my bones and joints are the only things that don’t hurt. So in the world of crappy autoimmune diagnoses, I don’t think arthritis is likely. I guess that’s something.
The CT report also mentioned something about a misshapen bladder. “See,” I said to Dan. “I told you all this inflammation is taking up needed space! No wonder I have to pee every three minutes!”
I’m more than ready for a(nother) diagnosis. While I appreciate the professionals not wanting to mask any of my symptoms with drugs, I’d probably sacrifice a small child if he was waving around a steroid prescription right now. Think of it like reverse ‘roid rage.
I didn’t sleep well last night. Yes, again. I was overthinking the whole lupus-rheumatology thing, even though I promised myself I wouldn’t. So it’s back to moving the compulsive thoughts to the frontal cortex. I’m not feeling anxious, really. Just uselessly spinning the cogs, because I can’t do anything else.
On one hand, I’m tired of wondering what’s wrong, bitter about needing to. And on the other hand, I can barely use a fork because it’s too heavy, and wouldn’t it be nice to know why? Maybe even treat it?
I vacillate between letting myself hope for something better and believing the only thing I can trust is that medical pursuits are colossal wastes of time for me. All this time I should be living while the tumor isn’t growing, and instead I’m stuck in bed. Saving all my energy for getting to the toilet in time.
It’s depressing. And not just a little bit.
I made a document on my phone of all the symptoms I can think of, trying not to be dismissive of anything. If it’s caused by the brain tumor or a long-term side effect of chemo, I need to let the doctors say so. Maybe I’m ignoring something telling, writing it off as insignificant because I don’t know what’s what anymore.
The positive ANA test does point to something. Lupus or Sjogren’s Syndrome or Myasthenia Gravis. But I considered all these things before, years ago. And what showed up was a brain tumor.
When I first met my primary doctor here, she asked me if there was “anything else” after we went over my diagnoses. “Not that that isn’t quite enough,” she added. We laughed, because what else are you going to do?
I’m too tired for hope today. Someone else can do it instead.
