Diagnosis and new treatment... confused - Behçet's UK

Behçet's UK

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Diagnosis and new treatment... confused

Camp1997 profile image

Hi everyone!

I went to the Rheumatologist today, and he said I do indeed have Behçet’s disease! He wants me to stay on colchicine (1 a day) putting me on prednisone (2 a day) and azathioprine (1 a day for now).. does anyone have experience with this?

I also can’t help but think that I don’t have it as bad as most of you do... and I do feel bad for taking a diagnosis even though I’ve only had one major flare. But constant oral ulcers and general soreness in my joints and my eyes. And very very bad headaches that make me dizzy and nauseous.

14 Replies

It’s good you have a treatment plan. Sound like usually behcet drugs. Prof fortune at London Coe v keen on athioprine at the moment. You haven’t taken adiagnosis away from anyone else, it’s probably a sign there is more awareness of behcets now which is good for everyone,

Hi There I am 13 diagnosed spent first five years juggling various meds. Prednisolone be wary they have awful side effects. I was nearly blind in my left eye and My eye specialist finally got the ok from the general medical council to prescribe me Humira. It has been my saving grace. I went from 15 tablets a day to one jag in the stomach once a fortnight. Eye has improved so much. I think its really trial and error to get the correct meds to control your symptoms. I still get mouth and the downstairs ulcers and canker sores on my skin. But its mainly under control. Good Luck as Having Bechets to me is being a medical guinea pig as Drs just dont know with it being so rare. 😒

Stacey- profile image
Stacey- in reply to Stacey-

13 years

Camp1997 profile image
Camp1997 in reply to Stacey-

I figure it has so many crazy symptoms that it’s hard to tell what you will get next! I will have to look into Humira if these don’t work!

That combination of treatment worked well for me for about a decade. I took Prednisolone 5mg daily, azathioprine (with monthly then 3 monthly blood tests) but I did not manage the colchicine as caused me nausea, diarrhoea and GI side effects. Would increase steroid if I had flares plus use the triple mouthwash and topical steroid (Synalar) for other ulcers.

Don’t feel bad about accepting a diagnosis but understand your emotions will change as you deal with the diagnosis, maybe have a bit of “survivor guilt” (eg Thinking “I am nowhere near as sick as some patients”) but also having to readjust your outlook on life and adapt to taking daily meds or managing flares. The Behçet’s Centre of Excellence psychologists talk about the process of grief and reaching acceptance or accepting the Behçet’s disease.

It is good to have a diagnosis so you can make sense of what has happened to your body and what the risks are if the inflammation is not controlled eg eyes at risk of uveitis, headaches, joint inflammation.

We are all different, unique, and the Behçet’s diagnosis is descriptive ie Dr Bechet named a group of symptoms and parts of the body affected. One day the researchers and clincians may identify subtypes of Behçet’s eg more symptoms of mucocutaneous behcets (mainly mouth and genital ulcers) v neurological pattern (brain affected more) , v those with more blood vessel issues (like blood clots and PEs in the lungs). It is great the UK Behçet’s centres of Excellence can gather all the data and contribute to research to help us and those diagnosed in the future.

Wishing you all the best and hoping those meds help you recover.

Pixie013 profile image
Pixie013 in reply to Legomum

Great post. Legomom!

I got diagnosed quickly too, possibly due to the severity of my symptoms which were severe genital ulcers that literally ended up looking like I had a flesh eating virus down below. Was hospitalised for five days. None of the many doctors I saw had seen it before, but a German doctor practising in New Zealand (where I live) figured it out.

Now I’ve had my diagnosis for a few months I’m a bit depressed about what might come next (I know I know, stay positive blah blah - that’s nice in theory but sometimes you’ve gotta just go through the self pity stuff for a bit haha). And the thing I’m struggling with the most at the moment is waiting for the next thing to happen - like I got this zit thing on my forehead and I was like “is that behcets”.

I’m on colchicine, 0.5mg only cos I was getting nausea and gastro symptoms at 2mg. Still a bit of that on 0:5 but it seems tolerable at the moment. Getting mouth ulcers (only had a few before my first big flare) and some scalp things but other than that I’m symptom free (touch wood!).

I hope your drug regime works, wish you all the best!!! And sorry for the whinge on your post haha.

sam0511 profile image
sam0511 in reply to LisaNZ

With you on the next thing to happen - I too put everything down to Behcets but it could be age, being female etc. I don't take any anti-inflammatory drugs, topical creams or eat food that is deemed a natural anti-inflammatory. All the boring details behind thid are on my posts. I had no more genital ulcers after I discovered this. Hope it helps.

First thank goodness you have a diagnosis, and don't feel bad for taking the diagnosis - in fact consider yourself extremely lucky and go and buy a lottery ticket! Regarding your eye involvement - I take azathioprine, 150mg daily reduced now to 100 because of eye involvement. On the reduced dose I think I may be having very mild flares again but as long as my eyes are safe I can live with it. You will find so much support on here, as I did. Wishing you all the best. x

Sometimes I feel the same, but those constant symptoms still affect your quality of life... at least for me it does. I’ve been fighting with my doctors for over a year to get where you are. That’s awesome that they’re taking you and your symptoms seriously. Prednisone always helps to settle a flare. I don’t have any mouth ulcers when I’m on it. I take colchicine daily. I could only tolerate 2 a day and it doesn’t really help with the symptoms. I heard good things about azathioprine but I couldn’t tolerate that either. Next step for me is REMICADE. Good luck. Be kind to yourself.

For me, Behcet’s has been an instigator of medical ailments and an antagonizer of those ailments. Do not underestimate the seriousness of this disease. Behcet’s travels, seemingly seeking out different areas to attack. My personal experience has included problems with my lungs, heart, eyes, joints and skin due to Behcet’s since approximately 2003. Concerning your question about Colchicine, I have taken it for years I believe without added problems. It is said it help with ulcers but I think the Azithroprine (Imuran) helps more with that. Find a physician you trust and do everything you can to avoid flare ups. Good Luck!

Be grateful for a diagnosis. Now your docs and you can work towards better health. I made a comment to the Rheum’s nurse about all the patients they saw far worse than I am. I’ll just say she gently shot down my line of thought.

I’ve seen images of Behçet’s lesions. The oral lesions don’t look bad at all compared to an internet image search. The genital lesions from which I suffer aren’t as deep

as some I’ve seen but continue to move, grow, retreat (maybe?). What started as a tiny sore is now three lesions that cover more than a square inch total and still hurt. I start to tense up just heading to the men’s room because I know I’m going to experience toe curling pain as I pee and after as well. The first lesion started about a year ago. My point is this, others get lesions and they are treated and go away. Mine continue to plague me. Don’t judge your condition against others. If one has an autoimmune disease they are in the fraternity. No one is judging the intensity of your symptoms. Peace.

Camp1997 profile image
Camp1997 in reply to Number4

Thank you so much! I really needed to hear that :)

Hi, at least you know what you’re dealing with now, I knew I felt awful. I have similar symptoms to you. I had horrendous mouth ulcers, joint involvement but not eye, migraines amongst others. I had battled with migraines for about 15 years & only got those recently under control with a regular beta blocker. I’m on colchicine, two a day as I couldn’t tolerate 3. CoE was keen to try azathioprine but that’s still in obeyance. I’ve done quite well on colchicine estimated 50-80% improvement. It seems to be age wise that they are not so worried once you’re past 40 ish as risk of complications seem to be fewer. Best wishes

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