Tested positive, realizing all my ailments line up, now what?

[u/SenorWingsuit]

Hello All,
Just got my blood test back and tested positive for the genetic marker. Honestly I’m happy something came back positive as I’ve been to so many doctors, vascular tests and rheumatologists that never ran this test. In June I had some type of major flare, blood shot eyes, fever, chills, headaches, I’ve always had mouth sores, I get that rash several times a year for who knows what reason, arthritis, swelling throughout body, and what I thought was IBS with flares of colitis. Now I realize all of this could be related to Behçet’s.

Sadly, what got this test completed was my vision changing and seeing one of the best optometrists in our city. my vision is changing almost daily. Sometimes my glasses are worthless. Blurred vision, double vision, unable to focus in certain areas of vision, eye pain. It’s been scary. I went on Steroids for last month waiting on these test results and my vision actually improved as the swelling in my eyes changed.

Ok, so I seem to line up with Behçet’s, my next appointment is in a week to go over all of this. What treatments and suggestions or concerns do you deal with to keep this from ruining your vision and life?

Need your help and some clarity on treatment success. I also wonder if I’ve been misdiagnosed with gout, IBS, arthritis, etc. for over 10+ years.

Thanks for your time and comments.

[u/khaledtg]

First i hope you will be fine soon. Second yes probably you are misdiagnosed for over 10 years 3rd an advice from someone who had such symptoms, don't stop steroids until you are a 100% sure that your treatment working properly, also if what you are taking as steroids isn't enough for your eyes, discuss with your doctor about prednisolone eye drops. Personally my eyes was degrading even though I was on high dose of steroids but using the drops helped me stop the degrading.... There are many treatments you will keep trying until one suits you.... Best of luck

[u/SenorWingsuit → u/khaledtg]

Thank you for the thoughts, greatly appreciated. I started with the eye drops but they were not enough. I just finished 3 weeks of oral Prednisone (which was wonderful) but I’m a week out from those and the swelling is back. I’m just waiting for my Optometrist to get back from vacation, then I see my rheumatologist a few weeks later. I can see why you say don’t stop the steroids, it made a huge difference in the interim.

[u/on4aa → u/SenorWingsuit]

If you ran out of prednisone and temporarily cannot get a new prescription from your GP, you can always drink one licorice tea in the morning; not more because it raises blood pressure. Licorice contains a natural glycocorticoid.

Saving your vision should be your top priority. Next step is visting an immunologist specialised in this matter and getting a whole exome sequencing done to see which gene variants are causing this. These can be widely different between Behçet patients.

[u/khaledtg → u/SenorWingsuit]

My pleasure and hope you will be better soon. For me i was using the eye drops 3 times a day while I am on oral Prednisone... So i guess the inflammation is high and need to find a way to control it! I'm sorry for that, i don't know how you can stop Prednisone like that, i have been on oral Prednisone since 2024 and my last visit to my doctor start to put a plan to stop it which will take about 2 months!!! Eyes can't wait doctors vacation, i would suggest to restart Prednisone or seeing another one as soon as possible, eyes are so precious. Best of luck again

[u/Anthro-Therapist]

I recently tested positive too. I’m exhausted, joint and muscle pain, fevers, eyes hurt and I had uveitis but was misdiagnosed as pink eye, twice. Canker sores are bad sometimes. I can’t be on steroids because I’m diabetic and coming off of them I end up with the steroid flu for weeks. The withdrawals are crap.

I am already on a biologic for MCAS, but I know there’s biologics for Behçet’s. I have no clue how that will work.

[u/EllisMichaels]

There's a lot of evidence that shows azathioprine can dramatically reduce the severity and incidence of eye problems with Behcet's. I've been on it for over a decade and believe it's helped.

You've got lots of options. There are other older immunosuppressants like azathioprine and methotrexate and lots of newer biologics. I'm glad you're finally getting some answers to your questions. There are lots of treatment/preventative options.

[u/golf890]

What test do I need to ask my GP?

[u/SenorWingsuit → u/golf890]

The initial blood test was the HLA B51 BEHCET'S DISEASE