Behçet's UK
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Possible new diagnosis, thoughts?

Hi everyone,

First time posting but I was hoping to get some thoughts from those that have been suffering from this terrible illness for awhile. I am currently in medical school and am studying for one of the biggest exams we have, i.e lots of stress going on. Anyways, a week ago, I noticed I had a canker sore in my mouth that quickly grew to become bigger and more painful than any I had ever had before. Then multiple smaller sores started breaking out until I had about 5 of them.

About a day later, I started having a sore area on my vulva that was at first just painful with nothing there and then grew to become an ulcer with a white coating. I then noticed I had another huge spot and then 2 more tiny spots that also looked like ulcers. These continued to grow and become more painful so I ended up going to a physician(one I have never seen before, I was trying to establish a new primary care doctor). She took a look at my mouth and my vagina and said she thought it was Behcets. She said that she's had 3 other patients with it and it looks exactly the same. She didn't do any STD cultures or a speculum exam. I am married and neither of us felt like it was an STD or that it looked like herpes. She then told me that there was no cure, that topical steroids are used on the ulcers to control pain and sometimes oral steroids. So she prescribed me topical hydro cortisone and sent me on my way.

So of course I go home and do a bunch of reading on this disease and come to find out it's a lot more serious than just a bunch of painful ulcers. By the next day, I am feeling 10x worse. The ulcers have now lost the membranous covering and urinating is excruciating. I decide to go to an urgent care because I was frustrated with the physician I saw the prior day for not giving me more info on the disease or giving me any plan moving forward. I told the urgent care that it was possibly Behcet's and they went ahead and did a herpes culture just to rule it out. The practitioner said though that she had seen a lot of herpes and the ulcers from herpes are never as large or deep as mine are. So she gave me pain medication and a course of oral prednisone and recommended I follow up with my primary care.

The next day, I followed up with a new doctor who said she didn't have any experience with Behcet's but that it sounded pretty definite with my mouth/vaginal ulcers. She gave me a referral to follow up with a rheumatologist and an ophthalmologist. She also wants me to start on Colchicine to hopefully prevent any recurrences.

I guess my questions are is this a little premature? I'm worried about starting Colchicine because if the diagnosis of Behcets is based on having recurrences, and this medication blocks recurrences, how will I know if I actually have the disease? Her reasoning was that it is a good safety plan so I can study and get through this test without having to worry about getting ulcers. Which of course I want, but at the same time I would hate to take extraneous medications for a disease that I may not even have. What are y'alls thoughts?? Did your physician's wait till you had multiple episodes to treat??

Also I am so sorry this is so long, just trying to get all the details. Thank you for reading.

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My rheumatologist knew I had Behcet’s through joint inflammation, uveitis, and mouth ulcers. It took two years to come to that conclusion (based on the uveitis), before my diagnosis was JIA.

I was given colchicine for my mouth ulcers and it’s supposed to help. My doctor gave it to me as a preventive measure as I had ulcers throughout my childhood too.

When I had a flare (like you described with the ulcers) a year later, I was given steroids through IV, because it was really painful to speak, drink water, and consume food. As a result, it helped me. I am mostly on other meds, but weaning on steroids.

I think your doctor may want to treat and make you feel better. The steroids are much stronger compared to colchicine.

In addition, magic mouthwash helped me. It is lidocaine and something else.

Hope you get better and fare well for your tests!

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Thank you for your response and advice. I've read that the uveitis often presents itself 2 years after the initial flare so I'm worried that might still be coming in my future.

That's good you have been able to wean off the steroids- i know they can have some terrible side effects. Again thanks for the advice.

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Hi rcamos,

First of all, a warm welcome to the forum. You’ve found a really good place for advice and empathy and where there are many people who suffer with Behçets.

You seem to have gone through a process in just a few days which for many of us has taken months or in some cases many years! Now, obviously that’s a positive thing, but I totally get your concerns!

Having herpes ruled out is certainly something that most of us are familiar with as a starter. Having the ulcers as you describe certainly sounds suspiciously like Behçets. But a definitive diagnosis is usually given after a third symptom - usually eye involvement. Although, I know that the diagnostic criteria has changed in recent years to a points scoring system where other things are, quite rightly, taken in to account, like gastrointestinal involvement and joint involvement etc. Someone else will no doubt clarify this for you.

I would have said that the response you’ve had so far from the medical profession has been a correct one ie to prescribe oral Prednisolone (here in the UK it is Presdnisolone - in the US which it looks like you are it is Prednisone) to clear up the ulcers and you can be comfortable.

The next step would also be colchicine. However, I get your reluctance. I think that if I were in your shoes I would also want to ‘watch and wait’ before initiating a course of colchicine - as you say, how do you know that there would’ve been a recurrence? From my experience, the colchicine can also come with some nasty side effects so that is also something to consider!

My best advice would be to take photos of your ulcers while you have them. If they are Behçets ulcers they will be extremely painful and most likely leave scarring. But be sure to take photographic evidence of the ones you’ve had so far, along with any unusual rashes or swellings or anything else unusual on your body.

Of course, the decision on the colchicine is yours. But congratulations on achieving in a very short space of time what many of us wait years for lol!

I’m sure someone else will come along and give you much better advice than me soon, but in the meantime, those are my initial thoughts for what they’re worth.

Sending you very good wishes and much luck,

Will 😀

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Good answer, Will, but I ought to point out for others reading this that Behçet’s ulcers are not always deep, extremely painful and scarring. Mine aren’t: one of the reasons it took me 50 years to get a diagnosis.

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Thank you for clarifying that, Jaxxi. Good point 😃

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Thanks you for the response and welcome! I've been reading lots of posts on here lately and they have been very helpful. I thought the same thing about needing a 3rd symptom to really diagnosis the disease or having the ulcers multiple times in a year. I've read that uveitis usually occurs 2 years after the first flare so I'm worried that might still be coming.

I'm glad I was given the oral Prednisone, the topical creams didn't seem to be helping and now I feel like I'm on tail end of this flare. I've read about the side effects of Colchicine so that is part of what makes me hesitant to take it. I think I might just take it anyway as a preventative until I can see the Rheumatologist and see what he has to say.

I know many of you have struggled to get a diagnosis for years so it is a positive that someone thought of this disease immediately. Although, to be honest, I'm a little leery of it. Like I said, the first physician I saw said she thought it was Behcet's because she has 3 other patients with it. I'm wondering if she's misdiagnosing people though, because it seems strange for one doctor(that's a family practice doctor) to have 4 patients with this extremely rare disease. I guess part of me is still hoping I'm just genetically predisposed to ulcers and some freak virus gave me this.

I wish I had taken pictures earlier, I knew I should be but to be honest the pain was so bad when they were at their worst I didn't want to go near the area.

Anyways, I thank you for your advice and well wishes :)

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Hi rcamos

For me you starting a small dose of Colchicine to help ease the ulcers is not a bad thing, I felt relief from this drug pretty quickly, though I did have to come off it eventually due to an allergic reaction and the ulcers etc returned, as for the Prednisolone I went on this next and it showed good signs initially but soon all my symptoms returned and 7 months later I've weaned myself off this, as per rheumatologist, and things remain the same and worse...

As far as your ulcers are concerned, I have been having these, both types, for years since around 16 and did not develop lots of the other stuff until many many years later, I guess now I did not recognise a lot or join everything up together and never associated the genital and oral ulcers together when speaking to doctors and got sent to gynecology and dentist hospital and nobody ever looked at everything as a whole until I brought it back up yet again... because I now know when ulcers are starting I have a feeling in both areas, I start to treat these areas immediately before anything appears, you will not stop the ulcers forming but you can stop the bacteria making them worse. As far as when you are urinating you can try using water in a plastic squeezey bottle to dilute at the same time this has worked for me.

Good luck in getting this under control and trying the medication for a short time is not going to be a bad thing right now especially when you need some relief to help you go through your exams you can then come off it and see how things are then.

Take care, Gillian

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Thank you for your reply. I think I will go ahead and start the Colchicine while I wait for my appointment with a Rheumatologist and then see what he says.

That's terrible it took so long to put all your symptoms together. When I first went to the doctor, I mentioned the genital ulcers first and I could already tell she thought I just had an STD so I know it can be frustrating.

Thank you for your advice, you take care as well.

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Hi, I had similar reservations in starting colchicine prior to referral to one of the centres of excellence in the UK. I had suffered the ulcers for years and was nervous about taking the colchicine. Within 2-3 doses the ulcers disappeared and I found myself ulcer free (or so I thought) and so much more comfortable. When I did get to the COE almost 6 months later, there were ulcers down my throat which I could not even feel & I also had genital scarring & redness but no knowledge of ulcers in that area. So from my experience I was glad to start the colchicine when I did, I had had the oral ulcers under my tongue, on my tonsils, etc. I would recommend taking photos as well as the COE advised this was useful in diagnosis. Hope that helps, best wishes

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That does help, thank you. I think I will start taking the Cochicine. It's been a week and some change now and I'm still unable to walk without pain due to the vaginal ulcers. So I haven't even healed yet from the first flare and am already dreading the second.

I'm glad your ulcers are under control now. What a miserable and crazy thing.

Take care.

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I had ‘herpes’ for six months before my doctors would consider I had anything else. I had to fight tooth and nail to get them to consider anything else. I failed six herpes tests all the while they kept raising my dose of the antiviral medication. It had to get bad, I could not eat (between 16 and 20 ulcerations in my mouth going down my throat) or walk well (12 valvular ulcerations). Also had to sit in an epsom salt bath to make urinating tolerable. I ended up in the emergency room before they took it seriously. If I knew then what I know now, I would have went strait to my Dermotologist first! They took biopsies and started me on a steroid. Gynocologist took a biopsy and gave me a clobetasol, a steroid cream, which is all that rids me of the vuvular outbreaks quickly!

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