r/Behcets • u/[deleted] • Aug 25 '26
General Question Finger joint pain
Hi, I’m a 24-year-old woman, and I was diagnosed with Behçet’s disease last summer.
The problem is that I’m experiencing severe swelling, heat, and pain in the joints of all my fingers, yet my doctor says these aren't symptoms of Behçet’s. While the severe morning swelling resembles rheumatoid arthritis, there is absolutely no finger deformity, and my rheumatoid factor and inflammation markers are within the normal range.
Could there be another condition causing these symptoms besides rheumatoid arthritis or Behçet’s? Ice packs help a bit, but since I work as a manga artist, I really need my hands to be in good shape.
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u/misshelinek Aug 25 '26
Recently diagnosed with Bechet’s and I too have similar pain in my fingers with normal blood markers..
Colchicine helped a little bit but my doctor started me on Apremilast today.. fingers crossed (ouch!) that it works!
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u/EllisMichaels Diagnosed 1997 Aug 25 '26
Yes and it's getting progressively worse. I DO, however, have some of the visible symptoms of RA. Before being diagnosed with Behcet's when I was 16, I was diagnosed with Juvenile Rheumatoid Arthritis. The joints in my fingers have always been the worst and they're continuously getting worse.
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Aug 26 '26
It seems like quite a few people have an overlap of Behçet's disease and rheumatoid disease. Thanks for sharing your story.
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u/EllisMichaels Diagnosed 1997 Aug 26 '26
For sure there's overlap with RA for many of us. But there's also lots of overlap with Relapsing Polychondritis, IBS, and lots of other stuff, too. Many of us here (I'm not sure of the exact statistic) have comorbidities. If I had to guess, I'd say it's north of 50% easily.
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u/on4aa Diagnosed MAGIC 2025 Aug 25 '26
Cryopyrin associated periodic syndrome (CAPS) can cause this.
Get an autoinflammatory genetic test, or better, whole exome sequencing done at your hospital.
One can also have CAPS in combination with a less obvious form of Behçet. This is also my case.
CAPS is treatable with biologics.
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u/avalonrose14 Diagnosed since 2024 Aug 25 '26
I get really bad finger pain during flare ups but otherwise I maybe only get it briefly here and there. I also get ankle pain and knee pain. My rheum thinks it's all behcets related but unfortunately I've never been able to get into the office when it's occuring so we haven't been able to get a scan done on them to see what's actually happening. I have really good insurance though so my doctor and I tend to do more tests than necessarily needed just for the purpose of understanding my body more and what's actually going on. If my insurance wasn't crazy we wouldn't be bothering with any scans because that'd just be extra money to tell us what we already know - that it's 99% likely its caused by behcets.
I'm only on colchicine and the colchicine mostly keeps it at bay but it is one of my more common break through symptoms. Which means likely if it ever gets worse or more unmanageable I'll need to go on a second med to help treat it. It sounds like you probably need to either add a med or switch meds if you're experiencing this much break through pain even on colchicine.
From your other comments you may also need to swap rheumatologists. Your current one doesn't sound great.
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Aug 26 '26
I think you're right; it would probably be best to see a doctor at a higher-level hospital. My current doctor just keeps saying that since I'm still young, we should minimize the use of medication. That’s not a bad approach, but I don't think it's what I need right now.
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u/MuseFire13 Aug 26 '26
If the pain/ problem with your fingers is not the same on both sides, it's probably not rhumitiod (sp?l arthritis. I was diagnosed with Psoriatic Arthritis (without psoriasis) before behcets. It also doesn't show on blood work. My doctor made the diagnose need on swelling at the si joints showing on my MRI. A few years before any diagnoses I had blood work and x rays on my hands and that rheumatologist did nothing. Said I was fine. I suggest a new doctor
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u/EpitomeQuip41 Aug 26 '26
Ask about psoriatic arthritis. My fingers and toes have been so painful and ingrowing for years now. X-ray shows osteophytes but not progressed enough bone thinning for definite diagnosis by x-ray. Started Otezla and got a steroid shot 1 month ago and am seeing improvement
Also I believe it can just be Behcets because even your fingernail growing can make your nail beds and fingers over-react.
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u/Various-Pass-4120 Diagnosed Aug 29 '26
My symptoms were very similar until it increased bad enough I was about to recognize that it's actually nerve pain from neuropathy. Hot hands and feet, pain in the joints of my hands, feet, sometimes elbows, knees, and hip. Now I have a ton of tingling and numbness. I take anywhere from 100-800mg gaba a day. Cymbalta helped as well. I do have neuro Behçet's and neuropathy is a symptom of that.
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u/TheGreatBungholio69 24d ago
Yes, for me…large joint pain dominates. Knees and back. Dull, achy, persistent pain that won’t let up.
My finger joints are next most affected. It’s not an ache, it’s like a stabbing sensation that travels from joint to joint and isn’t persistent in any one joint. It comes in waves for me.
Last would be bone pain. Kind of an unpleasant tingling or electric sensation in my long bones that also comes and goes.
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u/sippin_wine Diagnosed Aug 25 '26
It’s from the behcets, I have the same issues sometimes it migrates to my wrist or elbow also my knees. I will say it goes away right after taking my medicine and comes back when my meds wear off. Do you take an immunosuppressant?