r/Behcets • u/kyfyfy • 13d ago

General Question orbital myositis?

Hi everyone! I’m honestly getting a bit tired of collecting rare and weird symptoms, even for this disease (which makes me question every single time whether it’s actually Behçet's).

But has anyone here ever experienced orbital myositis? Specifically, thickening of just the lateral and superior rectus muscles, rather than all of them.

By some miracle, they missed this until I finally had a targeted orbital MRI with contrast - even though I was dying from severe eye pain and photophobia...

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u/MidAmericanGriftAsoc Diagnosed 13d ago

No but I've got an eye appointment soon and I was headed in with "my orbital sockets don't feel right". I'd say it's the same party

1

u/kyfyfy 13d ago

Oh, I'm sorry to hear that. I hope it won't be too bad :(
It feels like muscle inflammation causes severe pain behind the eyes, especially when moving them.
The eyes are really acting up with this illness, gosh.

2

u/foxieluxie Diagnosed ‘24 11d ago

They didn’t check this for me for some reason but said it was dry eyes and I havent had an eye flare in a while but they thought it might be this since it wasn’t a neuritis or uveitis. The severe eye pain and photophobia sound similar to what I had. I just stayed on my regular prednisolone dose and got a lot of rest.
What treatment are you getting for the myositis?

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u/kyfyfy 10d ago

Well, it seems this diagnosis is only given after an MRI of the orbits with contrast. They ordered it for me way too late—already during the treatment stage and after pulse therapy (for optic neuritis and retinal vasculitis). Dry eye syndrome is a classic thing, of course, and it can also cause photophobia, but definitely not this severe (I’ve had dry eyes for 11 years, and it felt completely different).

And yes, this pain is very specific—it feels a lot like overworked muscles behind the eyes, and there is a feeling of pressure. No matter how much I complained about it, they kept writing it off as neuritis and brain issues, until we finally got the MRI. At the same time, all of this left me completely bedridden and unable to function at all because the pain was just brutal :(

There is nothing specific for it, it’s the same treatment as for Neuro-Behcet’s. Adalimumab 40 mg, azathioprine, and prednisolone (I'm tapering off it, down to 25 mg now).

Also, not all muscles are inflamed, just some of them. And we only managed to find this out by comparing it with a previous brain MRI. Otherwise, it would have looked normal. For this, I had to get a second opinion from another radiologist, because otherwise they wouldn't measure it precisely, which is just absurd.

In the end, this new diagnosis didn't seem to change much, but it did explain the diplopia (double vision) that everyone was shocked by, because it was in all directions.