I've seen a rheumatologist a couple weeks ago and he took x-rays of my lower back. Turns out my pain in my body and lower back could be from spondyloarthritis. I have an MRI this Tuesday to confirm. As I previously wrote I also have an inflammatory bowel, profound exhaustion and skin lesions. My eyes aren't inflamed but the doctor said I could be low on tear production which they see often with rheumatologic diseases.
any of you know if arthritis is part of behcet's disease, or is this just another disease?... PS. I'm on corticosteroids now for the inflamed bowel since my bowel symptoms got worse again.
Thanks a lot if you read this, xxx from Holland.
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lieke-z
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Thank you for the reply. Not sure what this means though.. One says it is associated with behcet's and the other says it's not. But thanks anyway. Well I am from Holland so all the English articles are not so easy to read. I'm pretty good at speaking and reading English, but medical language is a little too hard for me. Hell it's even hard in my own language Thanks for the reply though I will ask my doctor what he thinks!!
I find these papers and research articles hard to understand. I've always tested negative for arthritis but have dreaful arthritic pain. I've also been told my musculo skeletal problems are not associated with BD, but I think they are.
If anyone who has a sharper mind than me can tell me I'd be grateful - is this article saying you can have arthritic symptoms, muscul skeletal problems and spondywotsit, despite having negative results?
In fact, I've been covered in spots, have loads of ulcers, joint pains etc and blood test is negative for inflammation! I'd like to have something official and specific to show non-believing docs that this happens with BD. The article is dated 2011, I guess things have probably moved on since then.
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I meant to say, that within that article it says 'There are also some reports regarding the presence of acne-associated arthritis in a subgroup of patients with BD that may be considered within the broader concept of SpA disease complex'
Acne associated arthritis? I've never heard of that but I do have acne! At least I think I do, I'll post a pic. It's so frustrating that I can't do it here as part of this thread!
Maybe you should see a dermatologist for your skin problems? They don't make any sense to me either that's why I asked it out here. The one article says this.. other one says the oppsite.. quite annoying. But well, I'll ask my doctor in two weeks we have an appointment. Shall I let you know what he says?
I know exactly what you mean Tigerfeet as for years and years, I tested negative for everything. including ESR and CRP inflammation rates. It was always said to me that these rates do not reflect how bad the patient is feeling.
However the Doctors put it, they still hold much importance on them when trying to diagnose. In fact it appeared to be the reason for NOT diagnosing me and claiming there wasn't anything seriously wrong with me or it was psychological.
This went for around 20 odd years until about 7 or 8 years ago when I suddenly started getting neurological symptoms and also manifested lumps under the skin. The ESR and CRP blood inflammation rates went up. Doctors suddenly sat up and started to give me medication for the first time and also was having regular blood tests every month.
I have tested high ESR and CRP inflammation rates ever since, despite the amount of prednisolone and Immune Suppressants I have been given. I have not tested 'normal' ever since.....which obviously baffles me and frustrates my Neurologist.
Was the inflammation already there all the time but because the Doctors weren't taking the blood tests regularly enough they didn't catch it or was it gradually just getting high enough to be registered as high.
Not sure this helps you...but it does go to show you can be feeling very ill without blood tests to show. I think this is why Doctors find it hard to diagnose Behcets and the criteria is placed on symptoms rather than tests.
Did they ever do an MRI or something or ultrasound of your painful joints? Then a rheumatologist can say for sure if you have inflammation in your joints.
I saw a rheumatologist once who apologised because he said he was usually dealing with connective tissue disease.
Normal arthritis is the destruction of bony joints and the fusion of joint spaces.
As I understand things, the "arthritis" in Behçet's is different because the pain is derived from inflammation of blood vessels surrounding joints including most notably the knee joint.
Technically, the "arthritis" in Behçet's disease is "nondestructive arthopathy" brought about by vascular inflammation.
Blood flow increases when you mobilise and exercise. The increase in blood flow exasurbates the inflammation especially when you do too much.
So, as I understand it, our "arthritis" is different to someone who has rheumatoid arthritis or Ankylosing Spondylitis for example.
Further to this there is the issue of negative blood tests.
I have a couple of friends who have "sero-negative" rheumatoid arthritis meaning they have active RA and negative blood test results.
Behçet's disease can also be "sero-negative" meaning that there won't be any positive blood test results.
A doctor will recognise a diagnosis on a pattern of symptoms unless they are ignorant and sadly there are plenty of ignorant doctors around.
Sometimes there are tests that do come back positive that can indicate where a diagnosis may go.
For example, I am HLA B27 positive and for years in my medical records doctors wrongly assumed I had Ankylosing Spondylitis.
Trouble is that Ankylosing Spondylitis literally means "fusion of the spine and pelvic joints".
My spine and pelvis have never fused.
For whatever reason, a whole string of doctors never bothered to read my notes - never bothered to sit and assess the actual facts.
Had they done so, my diagnosis of osteoporosis at the age of 14 would have been seen at age 30 when my health collapsed again.
From there my Pituitary disorder could have been diagnosed and then my " arthritic" disease would have been taken seriously.
But nobody bothered. I have been failed by way more than two dozen doctors covering nearly 40 years.
All the evidence was in my notes but nobody read them.....
That is why we as patients need to take control of our I'll health and the treatments we need.
Hi Lieke, so it seems you are getting some answers at last. No it s not linked with BD as yet. As with any autoimmune disease it can be aggravated by something else and not necessarily the cause or reason. I gues that if you are autoimmune your body is more open to other diseases or it reacts with them. At the same time lots of people have osteoarthritis without any other disease.. I know this probably wasn't what you wanted to hear but is it what it is. You are young to have this problem, so I would suggest you concentrate on finding out about it as much as you can then you can make a judgement on best way to deal with it re medications, therapies, excercise etc. I do know that this can affect your bowel, so perhaps also the bowel could affect this??. You still need answers to your other symptoms but one battle at a time. Remember to take photos, keep a diary and take these with you to any consultations.
Hi Bili. Thanks for the great advice. I am getting happy when I see I have replies on my post. No it's not what I hoped, but I suspected it already. Well my rheumatologist is trying to find out if my other symptoms are behcets but I at least got treatment for the inflammation. I am so happy I went to see a rheumatologist because he is really going for it. I also went to a dermatologist and she said I have folliculitis (not sure I spelled it right). But I believe that is also a symptom of my "autoimmune". So I am gonna get medication for that too. And for my low tear production I got medication also. In about two weeks I will now if I have spondyloarthritis and what he is gonna do about it. Either way he will send me to a rehabilitation doctor to either reduce the pain of the arthritis or reduce the pain anyway. I will also get medication for it when it turns out to be spondyloarthriris. Thanks for the tip I am going to find out what the best
and the tear production problem could be Sjogrens which is a secondary condition that can also be connected to Behects. It is another autoimmune disease and people with one autoimmune disease are likely to have more than one.
I was diagnosed with spondoarthritis, I don't have ankolosis, I feel like I was misdiagnosed, my large joints get inflamed and I have arthritis pain when I'm in a flair, bechets is a cruel disease. I had bachets symptoms since I was 12 but not untill I was 30 after having strep the inflammation started. My thought is if it's spondo arthritis gets worse with time and bechets if your In remission, feeling well there is no arthritis. I take diclonific for inflammation. I don't eat gluten and excersise daily. I haven't been diagnosed by a doctor with bechets, it's rare in USA, I'm in boston ma and doctors think all my symptoms are not connected. My PC says there's no test or cure just treat the symptoms. I take Imatrex for migrains, only thing that works but she says then it's not bechets, don't know very frustrating, listen to your body, you are your own doctor. But to answer your question sponoloarthrits is only one part of bechets but it's a different disease.
Hi Lieke, I know you posted this a while ago but thought I would reply. I was diagnosed with Behcets about 18 months ago. I have had about 10 years of chronic lower back pain and pain in my hip or pelvic area. Sleepless nights, hard to sit still for longer than 1/2 an hour, hard to stand for more than an hour. I also suffered from mouth/genital ulcers and terrible stomach problems for 4 years. I also got what I thought were rashes on my legs and after a biopsy turned out to be vasculitis. So, an MRI was issued and it came back positive for non-radiographic SpA. I take celebrex to manage it but barely touches the pain. I can't even bend over if I don't take it though. I am also on Imuran for the other symptoms which has helped a lot with the ulcers. My biggest challenge is that linked to the SpA, a tendon in my foot tore while I was walking with my kids! Just walking. I have tenosynovitis (Which is inflammation of both the tendon and the sheaths) and causes tears and/or complete rupture. Ortho surgeon won't operate due to it being an underlying issue and not caused by an accident. I could also lose blood supply to foot or toes due to vasculitis during surgery. So, between my back and my feet, I limp everywhere. I'm not even 40! I also have developed peripheral neuropathy in my feet which is very bothersome. I am HLBA 51 positive but negative for HLBA 27. I am going for another MRI at the end of the month to see if there is any fusing and what the status is since it's been about 18mo since I had an MRI. I also have a colonoscopy scheduled next week due to my intestinal issues. I am in Canada where the health care is good (long wait lists) but Behcets is incredibly rare. My Rheum is amazing but I may go to New York (close to where I live) to see a Dr. Yazici (his father wrote a lot of work on Behcets). He is a Behcets specialist in the US. I've heard very good things about him. Not very close to you, however! Anyways, very long winded but I thought I would share and say, yes! Spondyloarthritis and behcets is very common! Sorry to hear you are not feeling well. I have taken some yoga and found 2 or 3 stretches that I try to do every morning and are hugely helpful. I also got free physiotherapy from the Arthritis Society of Canada with a note from my doc. Again, a few good tips for stretches and posture to make life a bit more bearable.
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Thanks for the reply though I will ask my doctor what he thinks!!
Do you live in Northern Ireland and have Behcets?
Are there any doctors in Ireland who know about Behcets ??
does very Behcets patient have a specialist??
Vasculitis in my Spine "Central nervous system Vasculitis"
