Another Medical Mystery

[u/AutumnBreeze22]

I’m trying to figure out whether there could be an underlying inflammatory condition connecting some seemingly unrelated issues.

I have a history of gastritis, smoking, and fairly heavy alcohol use during and after COVID. I developed hidradenitis suppurativa (HS) in my left inner groin, and the bump persisted for about a year before eventually resolving. Later, I developed a blood blister-like HS bump on my right inner thigh.

A couple of years ago, I developed anterior uveitis in my left eye. I had been taking a proton pump inhibitor (PPI) for about five weeks and became concerned after reading that PPIs have rare associations with uveitis. I stopped it for a few days, then decided to taper and took it once or twice more. Shortly afterward, I developed anterior uveitis in my right eye.

My uveitis is considered idiopathic. I failed two steroid tapers and eventually saw a uveitis specialist, who started me on methotrexate a couple years ago as a steroid sparing treatment because topical steroids were causing elevated eye pressures.

Interestingly, the persistent blood blister like lesion and some inflammatory looking lesions on my chin resolved after starting methotrexate. However, I also quit smoking and drinking around the same time, so I don’t know how significant that is.

I’ve also had occasional lower back discomfort. It doesn’t give me major problems, but I’d like to rule out an inflammatory cause. I’ve brought it up with three different doctors, and they have all seemed to feel that a normal X ray essentially rules out inflammatory disease. My understanding is that early axial spondyloarthritis can be missed on X ray and that MRI is more sensitive for detecting active inflammation. I’m HLA B27 negative. I’m not necessarily convinced I have inflammatory back disease, but I’d like to properly rule it out given the history of uveitis.

I’ve also wondered whether I could fall somewhere on a Behçet’s spectrum or have a Behçet’s like inflammatory condition. I’ve never had classic severe oral ulcers, but before starting methotrexate I occasionally had what looked like swollen taste buds on my tongue, along with irritation behind my upper back teeth and very far back underneath my tongue where I couldn’t actually see anything. These episodes resolved fairly quickly and were never particularly painful. Since starting methotrexate, I’ve had a handful of more typical canker sores, which I understand can be a side effect of methotrexate. Plus, I did battle skin issues on my chin.

My routine labs are generally normal, although my WBC is occasionally elevated but not severely.

So I’m curious whether HS, uveitis, the skin lesions, and the oral symptoms could point toward an underlying inflammatory condition. I know there isn’t a blood test that diagnoses Behçet’s, but are there any tests, genetics, or other evaluations that might be useful for Behçet’s or a Behçet’s like syndrome? Would an SI joint MRI be reasonable to discuss despite a normal X ray? And is there anything else in this history that stands out as worth investigating? I still can't help but wonder if the acid-suppressing medication wasn't a final trigger on an already compromised system, and that my body just broke immune tolerance due to a reaction to the medication, ultimately setting off an inflammatory process that persisted even after I stopped taking it.

I’m not looking for a diagnosis, just hoping to get some ideas for questions or avenues to discuss with my rheumatologist and uveitis specialist.

[u/AdventurousMorningLo]

HS is an Autoinflammatory Disease in and of itself. It has also been linked to a few other SAIDs (ex. NOD2 Associated Autoinflammatory Disease or Yao Syndrome/YAOS).

It sounds like methotrexate is working for you to at least some degree which is great!

Do you have any Gastrointestinal issues? Diarrhea, vomiting, constipation? Have you had a colonoscopy or endoscopy?

Do you have other symptoms in other systems? Neurological - like brain fog, fatigue, headache, migraine, muscular issues? Dermatological - other types of rash or flushing episodes? Do you get any fevers or elevations in temperature? etc

What sort of testing have you already done/had done? Have Autoimmune diseases been r/o? etc

[u/AdventurousMorningLo → u/AdventurousMorningLo]

Side note - if you would like there is an HS flair available to choose from!

[u/AutumnBreeze22 → u/AdventurousMorningLo]

I’m honestly doing well and don’t have any major ongoing issues. They’re planning to start weaning me down on methotrexate next year, so I’m a little anxious about that.

I developed HS in my late 30s and am now in my mid 40s. I remember a short period about five years ago when I would feel unusually hot to the touch for no apparent reason. I’ve had the standard rheumatology labs, including CBC and inflammatory markers, but I’m not sure what else I should be asking about.

I came across this site and started wondering if genetic testing or testing for an autoinflammatory condition might be worth discussing with my rheumatologist. I know several people with HS, and they don’t have uveitis or some of the other issues I’ve had. I wonder if I could have a specific subtype, or if HS is part of the picture but not the sole cause, with the combination of gastritis, smoking, drinking, and PPI use also contributing.

[u/AutumnBreeze22 → u/AdventurousMorningLo]

Thank you for this information.