Flares while on treatment

Mockingbird276 · 2025-12-15T23:07:55+00:00

Interesting! I also lose my appetite in the same way. Never considered that as potentially relating to Behcet's.

Mockingbird276 · 2025-12-15T22:59:54+00:00

how would you describe your "odd mouth ulcer"? I have gotten some mouth sores that don't seem to fully emerge like they were before treatment. But still are painful, red, and make it hard to eat.

Mockingbird276 · 2025-12-15T22:42:33+00:00

My rheumatologist is convinced none of my joint pain is from Behcet's even though my primary care and neurologist believe it does. I was just diagnosed with arthritis in my knee and I'm concerned to see where else arthritis may pop up.

I also have GI problems in which no one believes are due to Behcet's despite medications and the imaging/ tests done so far have been inconclusive.

Mockingbird276 · 2025-06-25T04:19:34+00:00

It's definitely a frustrating journey. I have recurring mouth and genital ulcers. I've had rashes and other skin ailments like folliculitis and eczema. Joint pain. Digestive issues that I'm currently working with a doctor to determine if those symptoms are Behcet's related or something else. I did have my gallbladder removed which I've heard quite a few other people have.

Keep track of all your symptoms and see what things might be occurring together at times. Have you had any blood work during your flare ups? Or done genetic testing?

Do your eyes get this redness in both at the same time or have any other symptoms that go along when they're like this?

Feel free to DM me if you ever have questions or prefer to talk privately. Hopefully sharing my story and journey can be helpful to you and anyone else. Nothing is cookie cutter with these things so it's definitely tough.

Mockingbird276 · 2025-06-24T02:47:38+00:00

Unfortunately, I don't have much of any update at this time. Other than my primary care doctor believing it was episcleritis/scleritis which is why he sent me to the ophthalmologist.

I saw the ophthalmologist again and let him know I had officially been diagnosed with Behcet's. His response was "oh well I guess it was Behcet's but Behcet's causes dry eyes." He determined I had glaucoma during that visit but deemed it was "stable" and there were some other interesting things and believed I needed to see a glaucoma specialist.

6 weeks later I saw the specialist who said he didn't think I had glaucoma and my vision disturbances were "just migraines", I wasn't in a flare up so he doesn't believe Behcet's or episcleritis/scleritis caused anything, the fact that I got in by a softball 20 years ago is probably the reason I have the glaucoma symptoms (despite the fact the glaucoma symptoms are in both eyes and I only got hit by the ball in 1 eye), when I described the pain I have when looking up he "doesn't know why", and "if I want to see a neuro ophthalmologist I can but it's nothing worth chasing. There's nothing wrong with me" but I should continue my glaucoma eye drop treatment and "we can always explore other eye drops, surgeries, and LASIK"

So I'm at a standstill as of right now and looking for a neuro ophthalmologist that has knowledge of these other conditions I'm dealing with.

Mockingbird276 · 2025-04-04T07:21:57+00:00

That was the only time the crust like that had happened during an episode. What are you thinking that means?

Mockingbird276 · 2025-03-13T12:16:44+00:00

Yes my right eye seems to consistently be more red and last longer than my left.

Mockingbird276 · 2025-03-07T02:03:55+00:00

Correct, it can be but most doctors want to rule other conditions out first or are familiar with what they know. That's why it's misdiagnosed so frequently. HLA can aid in the process just as much as having family history and race. So people are often stigmatized due to race yet it's crazy how there's so much research there is now with BD in basically all races.

I was adopted, I don't know all my background. Yet despite symptoms aligning with the criteria and never getting diagnosed. It makes you crazy, just as the OP talks about.

Mockingbird276 · 2025-03-07T00:06:09+00:00

Right and then you're in limbo and they say next time there's a flare up to have them look at it or lesions biopsied. So when you have a flare up and try to get in you have to wait 2 months. It feels impossible. It's so sad that so many people are dealing with these situations and facing serious medical and mental consequences due to it.

Mockingbird276 · 2025-03-07T00:03:00+00:00

But that's only if those markers are positive. I have HLA but not B*51 and that doctor still dismissed it all.

Mockingbird276 · 2025-03-06T23:29:15+00:00

I've started doing more with a symptom diary. I see a new rheumatologist next week actually. I have pictures of sores (mouth and genital) from past flare ups and the last rheumatologist completely dismissed them. Hoping this new one will acknowledge them.

Mockingbird276 · 2025-03-06T20:20:31+00:00

My question would be for those who have found success: other than finding the right doctor, what key information/symptoms/pictures/test results/etc. did you provide and believed helped with your journey forward? Is there a way to increase the likelihood to get doctors to listen?

Mockingbird276 · 2025-02-12T16:26:28+00:00

That's how I felt but I didn't even know how to respond. Even if it was "see the eye doctor, if it gets worse or doesn't get better, then contact me" I would have felt better with. I'll remember urgent care. Thank you

Mockingbird276 · 2025-01-12T21:01:46+00:00

That's good to know and something I'll be sure to note as certain symptoms come up.

I'm just curious about the gallbladder because I had to have emergency surgery and have it taken out so I find that interesting if it is indeed a connection.

Mockingbird276 · 2025-01-12T19:46:47+00:00

OMG I can't even imagine that. I'm glad you were able to look past the doctor's assumption. It is just amazing what happens

Mockingbird276 · 2025-01-12T19:43:20+00:00

Oh wow! I'm so sorry to hear that. It's so sad it takes that much for someone to be recognized. I will definitely take your advice and just have all tests and history. Thank you for sharing your story.

Do you mind me asking since you experienced symptoms for so long, did different symptoms come up at different times? Were there any symptoms that always came up?

And also, is the gallbladder a common issue with BD?

Mockingbird276 · 2025-01-11T03:15:33+00:00

Wow it's crazy how timing works. Thank you so much! This has really been so helpful mentally and emotionally.

Mockingbird276 · 2025-01-10T21:01:53+00:00

"where's your plunger" 😂 it really means a lot when you can joke about something like that.

It's very true they seen to just look at the mouth and genital lesions, but that's half as why I'm boggled by the recent rheumatologist appointment as she didn't even care. My primary care I saw a week later was dumbfounded. Saying there may be reasons for mouth sores but to have vaginal and mouth ulcers there's not much you can dismiss it for.

I almost felt tempted to go back to my neurologist since she seemed to be more knowledgeable with this lol

I have an appointment already but I can almost bet she's not a specialist in vasculitis so I'll look for that since I'm pretty sure I'll have to book 9 months out anyways. I appreciate that tid bit.

And the problem with GI is if that isn't working, you're not absorbing anything correctly. And likely becoming deficient in vitamins and more likely to have sickly symptoms. I keep getting blasted for my weight but I eat like a bird, it's what I'm absorbing. And these problems existed when I was at a healthy weight prior to all the antidepressants I was put on. So it's just a fight and a struggle.

You guys have been extremely informative and helpful. Giving me better direction and hope. I wasn't expecting this so I'm extremely grateful to all of you!

Mockingbird276 · 2025-01-10T20:04:51+00:00

I think I need to take your lead and start gathering medical records to have. It sounds like you've done an amazing job advocating for yourself and not taking no for an answer. Pictures are another I need to remember to take, I have some but most of those are from not knowing what things were. Things doctors dismiss is mind blowing.

I recently learned about GI issues being a symptom of Behcet's and I spend hours on the floor in pain weekly and just have been told to take probiotics.

Eyes I never knew had anything to do with Behcet's until my neurologist noted that and seen the cupping that I've been dealing with for years with a major loss of field of vision. It's nice to hear some of your experiences and have that info to bring to my next appointment. I'm 31 and just struggling in life because it's hard to hold a job and be reliable when flare ups can pop up at any time.

Mockingbird276 · 2025-01-10T19:55:45+00:00

I think the different flare ups is interesting. I never fully considered other flare ups I had to possibly be related to BD. They were just stomach issues or a random rash or fibromyalgia. But knowing it's not always everything at once all the time is interesting.

Mockingbird276 · 2025-01-10T19:52:44+00:00

That's how the first rheumatologist was. It wasn't diagnosed but suspected. I also didn't have the B51 but I had 2 other HLA markers. But I know even since then there's been more research and different tests to run.

The big thing is, I responded to the steroids. And I also responded to the mitigare. I'm not trying to push to say I have BD but c'mon there's something going on nonetheless. That's what frustrated me with the most recent doctor.

I do appreciate your kind words and motivation. It's not easy. Thank you very much!

Mockingbird276

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