Unsure of bechets or some other autoimmune - Behçet's UK

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Unsure of bechets or some other autoimmune

PS1234
PS1234

Hi guys , am so confused . I started getting alot of mouth ulcers and one inside my nose , non on the genitals , no joint pain . These blisters start with an itch then the blister forms . Some blisters burst and took long to heal and some leave a black spot . currently am on prednisone 10mg a day . doctors are confused . They have done all kind of blood tests everything was negative . I feel fit but once I stop the prednisone the mouth ulcers slowly reappear . my question is do I have bechets from your"ll experience or what is this ?

11 Replies
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I would guess you dont have enuf of the common symptoms at the moment to be firmly diagnosed as behcets!

I dont know how long u have had ulcers but i had mine for years before i was diagnosed! Its a process of elimination of other more common diseases and the progression of behcets symps.

Just my opinion obviously.

I hope u get better soon! Ulcers are miserable!!!

Persist with ur doc tho! U may develop more symptoms. I hope not in a way as im acutely affected and i wouldnt wish it on you or anyone!

Sending u a wee hug!!

PS1234
PS1234 in reply to conniemcall

Thank you for your reply , ive had the ulcers for about 7 months now prednisone seems to keep them at bay . the blister appeared about 4 months ago . it started after I had a very stressful moment in my life . does bechets go into remission completely ?

Wishing u well

conniemcall
conniemcall in reply to PS1234

Im 61 and have had no remission from symptoms im sad to say! But its such a unique and individual disease that varies enormously! My ulceration bouts last 3ks and by week 3 of healing im aleeady starting week 1!

Relentless!! But some people may have 3 or 4 flares a year! Theres no way to tell! I just hope for a favourable outcome for u!

Meantime keep ur spirits up!!

Lots of people care!!

This forum know ur pain and distress for sure!

Take care!!

I would agree. There’s a list of symptoms that you have to have I order to have in order to have I order to have in order to officially receive a diagnosis of Behcet’s. There’s a reason this disease takes so long to get an official diagnosis. I had mouth ulcers since my teens. Vaginal ulcers for 23, it took that long. I really hope it just stays put. Sometimes your immune system can be running low and be a good indicator as well. But if, you keep getting them, keep pushing your doctors, at some point, something will show up. FYI there are some other illnesses that commonly have mouth ulcers, you might follow through on those to. Best wishes...

Thank u for the reply, doctors have tested for most autoimmune diseases n behcets seems like the onli one left unchecked at the moment , is there a complete remission ? how long do flare ups last ?

I hope yrs does stay put ,

No money in the world is worth this disease , wish we there was a tablet that cud just fix this

I had mouth ulcers on and off for years, vaginal ulcers, had huge gaps between the years. Skin issues came and went. Then I was37 and had the start of things going downhill. Then I was diagnosed with fibromyalgia. I was hospitalized several times before in the years before I turned 43, I kind of think of those as the warning shots across my bow. Since then I’ve had neurological, kidney, blood clots, it’s been severe. I use a wheelchair now. However, I also have a condition called Hemiplegic migraines that certainly doesn’t help the Behcet’s. I was in remission for years and it came on with a vengeance. Mine was I feel due to a hugely stressful situation piled on top of another stressful situation. I didn’t handle the stress well. I worked a lot and I was a perfectionist. If there’s one thing I could say is learn to deal with stress, and find outlets to handle anxiety. Thus disease does seem to feed on it. Managing feels definitely helps!

Hi, I’ve always been prone to ulcers but it is one of the first symptoms. These are not ordinary either, they can be large and spread across tonsils, throat etc. Blood tests will show very little if anything. I would have a good read through arthritis UK/versus arthritis and also use symptom checkers like Isobel. I’ve been diagnosed with Behcets but have no genetic marker, that said have a strong rheumatological thread in the family. Mother is is her 70s now being checked for autoimmune conditions, so you just have to keep on the trail with the GPS and consultants. One thing often suggested is a photo diary, ulcers, skin issues etc. This clinched my diagnosis. Best wishes

Mja75
Mja75 in reply to SCMW

Photo diary helped me greatly. I would have very scary looking rashes

, bruises, and ulcers, but every time I saw a doctor, there was somehow nothing to show. It was like taking a car to the mechanic and then it refuses to act up like it normally does when driving. Many doctors told me they just did not believe me. I started taking pics 20 years ago and thankfully that allowed me to get some help. Even now, those pictures tell a story, and when I see a new doctor, they still come in handy. Take pictures of anything strange looking, and keep copies.

Hi there,

As the others have said you need a lot more symptoms to be diagnosed!

However I wouldn’t want to wish this illness on my worst enemy!

It’s an horrific debilitating illness and I’ve really had no rest from this until I had cancer recently and the tough chemotherapy, that helped dampen down my symptoms for a short time, I had survived cancer twice now and I’m thankfully in my first year of remission, however my Behçets is now coming back with a vengeance!

Your mouth ulcers could just simply be down to stress, as stress can cause many real symptoms... once you are stressed your body’s immune system remains low, and that’s what might cause your mouth ulcers. Hence the reason they get better with the medication and return when you stop the medication. The best thing to do would be to see if there is any stress in your life and try to reduce it and also make sure you are eating well, drinking plenty of water. This may help...I’m not a doctor so please don’t take my advice as literal!

Hope you are feeling better soon

Dizzysmile 🤪

thanks Guys for the replies ,

@dizzy smile i do infact see flare ups after i stress , BTW this all started after a stressful event in my life .

this week i tampered down of the prednisone fingers crossed no flare ups .

Look up Oral Facial Granulomatosis (oral Crohns)

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