Symptoms & Reactions

Lupus Gets in Your Mouth, Ewww!

Dear Diary,

About a week ago, I prepared for what I thought was a routine follow-up with my doctor. Boy, was I wrong! I’ve been having some strange lesions in my mouth, specifically on my tongue. We first thought it to be oral thrush (yeast or candidiasis), like infants often get. So, when we first found out about a month ago, she treated me with a prescription anti-fungal mouthwash, and for the last few weeks, my tongue seemed to be getting better.

But, at this latest appointment, things were no better and in fact a bit worse. My doctor didn’t like what she saw, and she referred me to see a specialist for a biopsy of my tongue. She believes this latest problem to be another manifestation of Lupus. Apparently, it’s common to get painful mouth or tongue sores with this horrible disease. Geeze….

So, before I got in to see the otolaryngologist (the ear, nose, and throat guy), I decided to ask my dentist about it. Hubby had a routine appointment, and I asked if I could be seen as well. I tried my best not to look at his facial expression as he examined my tongue by pulling on it with a piece of gauze. Up and down, side to side, he lifted up my tongue to see every inch of it. Once he finished, he said he had no idea what it was, and suggested a biopsy as well. I told him I was already scheduled to see the otolaryngologist in about a week and a half. He said, “Good.”

I left there with a bottle of special mouthwash called Prevention Oncology Mouthwash, which is supposed to soothe oral tissues and help control sore gums, oral ulcers, and thrush. They also gave me samples of Biotene to help keep my mouth moist. It turns out that my sister uses both of these to help with the dry-mouth effects of chemotherapy. That’s all I need, another Lupus connection to cancer and chemotherapy.

So, finally today, I saw the otolaryngologist. I was fully prepared for him to say that in his expert opinion, it looked like I had cancer on my tongue. Instead, he looked at my tongue, pulled up his computer screen and told me it was something called “geographic tongue.” He pointed to a Wikipedia page that showed the grossest photos of tongues with the missing hairs and red sore areas—just like my tongue.

I was relieved, and I thought for sure, he’d have some remedy for me. Nope. He just said that it would go away on its own within about nine months. WHAT?! In the meantime, he said to avoid spicy, acidic foods and drinks.

That is all. Another wait and see, be patient scenario. I’m very grateful it’s not cancer, though. Very grateful.



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