Lupus with an Asterisk

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.”
lupus.org

Lupus and Allergies

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.

There was arugula. Then the spinach. Then toothpaste.

Here’s what I learned:

“Allergic disorders commonly occur in patients with systemic lupus erythematosus (SLE) and allergies to some drugs may occasionally be related to disease flares.”
PubMed

Lupus and IBS

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.”
Medical News Today

Other Potential Lupus Symptoms

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:

Heat intolerance
Swollen lymph nodes
Soft tissue inflammation
Positive ANA
Dry mouth and eyes
Sun sensitivity (rashes)
General fatigue
Muscle pain and fatigue
Elevated sedimentation rate
Headaches