Behcet's Syndrome Society
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Newly dianosed

Hi everyone,

I have recently been diagnosed with Behcet's. I have had RA since I was 18, with many other symptoms which could never be completely explained. I moved house for work a year ago and my new Rheumatologist has put together some of my jigsaw pieces in (hopefully!) the right order.

My RA was uncontrolled for a very very long time and we now think that was because we should have been treating two diseases, not just one. It looks like the Behcet's is causing mouth, skin, genital and corneal ulcers and sores, intestinal inflammation, some arthralgia, and loss of coordination and balance - I fall a lot.

Any advice would be fantastic. I'm still adjusting to the diagnosis: it wasn't unexpected, but is has changed my future plans considerably.

Hi (waves)!

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Welcome!

I certainly know how you feel. It seems terrifying and completely out of your control. However, given that you've been suffering from symptoms for years, this is actually excellent news. The sooner you treat Behcets the sooner you can start having your life back. I found online info made it seem hopeless, but once I got on meds my symptoms decreased drastically. Still there forever, but an annoyance instead of debilitating.

I can't believe with oral, genital, and ocular ulcers your previous doc didn't diagnose you. How did she/he explain all these symptoms?? So glad you got to see a new one who sorted this out.

My advice would be to take care of yourself right now. I went to see a therapist who specialized in chronic disease and sexuality, and have prioritized resting. A lot of people here have had success with cutting out foods, but so far I've found eating healthy and limiting baddies like coffee and alcohol has been enough. (Still have a daily cup of coffee, just have avoided a second haha). Top food culprits seem to be sugar, breads, and tomatoes, though even my rheumatologist said it's different for everyone. Hydrocortisone cream for genitals and steroid mouthwash for oral, and taking colchicine, vitamin D, and fish oils for Omega 3s.

With time you'll figure out what works for you!.

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Hey,

Thanks for the reply.

I think I wasn't diagnosed earlier because no-one was looking for it. All my symptoms usually showed up in separate batches, or if they did present together, I was seeing a different specialist for each of them and none of them were communicating. I also think that having been diagnosed with the rheumatoid, a lot of things just got shoved under that umbrella - or as drug side-effects.

I've had ulcers since I can remember. Once I went on MTX they were just thought to be side-effects. I only mentioned them to my new rheumatologist because they got worse and started to appear all down the back of my throat, on my tonsils and uvula. I get splinter haemorrhages in my finger nails, which was the other prompt.

I started on colchicine a month ago as a trial. It has helped the ulcers and the never-ending ache that my RA meds never quite got rid of. Right now, I just want to rage at the world.

I appreciate the support.

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This is a good place for raging. Have done it myself. Autoimmune diseases are so stupid.

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