I was diagnosed yesterday finally after 5 years of suffering. I've had genital ulcers for the past 9 weeks, the worst it's ever been, they start to heal, then pop up somewhere else, It's making me miserable. Any advice to help them heal faster? I am picking up my prescription for colchicine Friday and it can't come quick enough. I've also had the most horrendous joint pain and swelling mainly my wrists and ankles, it gets so bad that some days I can't walk. I've been left with quite weak 'clicky' joints, would lasting damage have been done or will it get better? I've also had excruciating pain at the base of my neck going up my skull, does this mean my spinal cord was inflamed? I'm so scared, I've read some awful things. I need reassurance that things can get better
I'm scared. : I was diagnosed yesterday finally... - Behçet's UK
I'm scared.
hi Charlie I have also just been diagnosed with Brachets and waiting for an appointment for the royal London hospital. I suffered with all what you have. I tried using salt baths and it did sooth a little but not loads. I also get swellings and pain in my neck but I wasn’t sure if this is all connected so hard to know isn’t it! I also feel exhausted some days like I can fall asleep standing. How old are you if you don’t mind me asking? I take ibuprofen to help with pain. So hard to explain to my husband some days my calves and arms are so tight like they are all bruised. Such a hard disease to get as not a lot about it. Sorry I can’t help much more still trying stuff myself xx
Hi bubble, thank you for the reply. I've used both salts also, nothing seems to work. I always had mouth ulcers and tonsillitis as a child. I was 40 in June and depressingly I couldn't walk on my birthday. It's been just over 2 weeks and no joint pain, but the last 4 months have been horrendous, with a flare up lasting 2 weeks, jumping from joint to joint, excruciating pain, id get a couple of days break in-between each one, I've been a mess. I haven't had problems with my eyes yet thank fully, but booking a an eye exam just in case. Don't apologise, its so nice to talk to someone who's going through the same. xx
Yes it doesn’t take it away the salt. I am 49 and only last two years suffered with genital ulcers but have always had mouth ulcers pretty much all my life. I am waiting to get eyes checked had it it both eyes for two weeks was so bad I couldn’t drive. But ok now thankfully. I had never heard of this disease had you? I was constantly getting told I had herpes and treated for this which did nothing it was so degrading as I am married and loyal. Not that matters just made me feel crap. I was pleased to get a diagnosis but also worried as no idea what else to expect and no one really knows x
Same as you I had so many swabs and blood test for herpes and all the other STIs and always came back clear, the GPs were useless, I was referred to rheumatology as urgent but a 12 month waiting list so I paid to go private and basically diagnosed me on the spot as he could see id had every blood test under the sun and all that was coming back was ridiculously high inflammation markers. I discovered yesterday that ibuprofen and naproxen actually slow the healing of ulcers, so no wonder! Do a little research into that. I'm also so worried, I've read some horrible cases but we just have to stay positive and take each day as it comes I suppose xx
I’m so sorry to hear what you are going through.
Although I had always had mouth ulcers, my journey with Bechets started in my 30s with a persistent headache and stiff neck. My doctor thought it was tension headache and prescribed antidepressants. My situation went rapidly downhill - I lost a lot of weight and I couldn’t move without vomiting. It turned out to be a blood clot in my brain and I spent several months in hospital. I was put in blood thinners, steroids and had a lumber puncture to relieve the pressure. Shortly afterwards I was diagnosed with Bechets and took immune suppressants for several years.
This was, touch wood, the one and only bad flare up I’ve ever had and was almost 15 years ago now. I still get tired and the odd achy joint, spot or ulcer, but it’s manageable and I take no medication. In my experience the joint issues are just temporary.
My point being is that you’ve passed the biggest hurdle. You’ve had a diagnosis and now it can be monitored and controlled. The right medication will make a world of difference to you and you can learn to pull back when you’re feeling tired, rundown or stressed. Try not to let it get you down - things will get better.
I wish you all the best.
Ps …my case was extreme and rare, but if the neck issues get any worse - get it checked out!
Hi red wineThank you for the reply. Oh god your experience sound horrendous, I'm glad you are so much better. I also had a DVT when I was 23, it's not until researching the illness you put two and two together. I had a very bad bout of flare up which lasted around 4 months in total, so debilitating, I haven't had joint pain for two weeks but the ulcers are still very much there. It's so nice to hear that things can get better! Thank you for the reassurance x
Hi!
I know it has been long time, but do you recall the characteristics of your headache? Like location, intensity, frequency?
I am 40, male. I am been having these headaches for almost 3 months now, sometimes with stiff neck. Before that I had eye problems (anterior uveitis with very high intraocular pressure), quite many and frequent mouth ulcers, rashes of all the types, and a "clicky" painful knee. As for my headache, doctors are clueless.
They must have been ongoing for a month or two. Just a constant dull ache in the centre of my head. The doctors were clueless - I had eye tests, they thought meningitis, even referred to a chiropractor! Eventually something was spotted in a second MRI scan, but I was very ill by then!
Looking back stiff neck and headaches are a very classic symptom of a blood clot and I feel it should been picked up earlier.
If you are concerned I would definitely suggest the possibility to your GP within the context of ongoing Bechets and see if you can get referred for an MRI.
I am so sorry to hear what you are going through. For my genital ulcers, my Dr. prescribes a prescription for me that is a topical steroid called: Triancinolone Acetonide Ointment 0.1%It really helps my genital ulcers. Maybe they could give you a topical ointment in addition to what else they have prescribed.
Take care of yourself.
Oops.... I spelled the ointment wrong ....It's called: Triamcinolone Acetonide Ointment USP, 0.1%
Thank you so much Psalm116.
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