I'm posting on this forum as don't really know where else to post but as HLA-b27 is auto-immune related, the lupus forum seemed most apt and as I have previously posted, I do have a lot of the lupus symptoms
I've been to my GP today for a follow up on the blood tests done at the beginning of October. I'd been told by the receptionist that my Vit D and TSH results were abnormal, so I've been haunting the Thyroid UK forum for the past 2 weeks. Get there today and my thyroid is normal, my Vit D was deficient at 30 and the HLA-B27 had come back as positive. The ESR result was "slightly raised" - sorry I didn't get a copy of figures. My ANA result was normal.
I've been given Vit D pills Colecalciferol 20,000 to take twice a week for 6 weeks and then a months worth of daily 1,000 for after, then she told me to buy over counter as will be cheaper.
Regarding the HLA-B27 she was talking about Ankylosis Spondylitis (as I had initially complained of joint and back pain), then waffled on a bit about how you could be positive and not show any symptoms till you were 90 at which point my husband (who had accompanied me as I can never remember anything much!) said "Well, she's in her 40s and she is showing symptoms so you need to refer" - another reason why I took him along - he can be forthright when needed
So, now she is referring to the rheumatologist (it will be Broomfield Hospital in Chelmsford if anyone else has been there).
Of course, I got googling as soon as I got home as no idea what this HLA thing is and see that it is actually linked to auto-immune diseases, not just the ankylosis spondylitis. As we waited to see the GP I was talking with my husband how you have to pick what symptoms you are going to discuss with GP as you can only discuss one thing at each appointment (big posters in our surgery stating this...) and you just have to hope you have picked the one that will get you the test you need
My symptoms are:
joint pain
fatigue/ feeling weak
anxiety
IBS
rash on exposure to sun
red rash across cheeks
glands up - seems all glands all the blinking time currently lol
mouth ulcers
dry eyes
cold feet and hands
pins and needles in fingertips
stiffness in back, hips and neck
inability to regulate temperature - I wake up at night so hot I feel nauseous - as an experiment I started taking my temp when I wake like this and it is usually about 36 - 36.5 degrees so not hot at all!?
shooting pains from wrists up arms
And probably others I cant think of right now - oh yes, brain fog is another lol, you know how it is
So, finally, getting round to my questions:
Anyone know anything much about this HLA-B27 thing and can explain it simply!
What do I say to Rheumy when I finally get there? I had an extremely severe case of glandular fever when I was 18 and I have never fully recovered. I've had these symptoms for 25 years and this is the first time I have been referred to anybody. And I still wouldn't have been today but for the pushy husband I have been unable to do anything much in my entire adult life - I'm incapable of holding down a full time job, days out are pretty much impossible most of the time and if they ever do happen necessitate bed rest for days afterwards! Getting anyone to take me seriously has been a almighty struggle - I know this is no major news to most of you - been there done that, t-shirt etc!
Ankylosing Spondylitis lol - brain work properly please!!
Hi,
It's a bit complicated but up to 10% of the population carry the HLA B27 gene but not all of these people will go onto develop a sero negative form of arthritis which is associated with HLA B27 ( Ankylosing spondylitis, psoriatic arthritis, Reiters syndrome etc ). Over 90% of patients with Ankylosing spondylitis will be HLA B27 positive.
Ankylosing spondylitis can be be a difficult diagnosis as it can present insidiously and can present differently in men and women. Men tend to get the " classic " form of the disease which presents with pain in the lumber spine which improves with exercise and worsens with rest. Another classic symptom is pain which worsens in the second half of the night and morning stiffness.
Women tend to have more thoracic spine pain and peripheral disease ( shoulders and hips ). It can also cause pain in the ribs and heels. Ankylosing spondylitis can be responsible for mouth ulcers and inflamatory bowel disease which can be misdiagnosed as IBS. It can take over 10 yrs to get a diagnosis. It can also present with normal inflamatory markers ( ESR and CRP ).
With your symptoms I would insist on a Rheumatology referral especially to a Rheumy with a specialism in Ankylosing spondylitis. The good news is that treatment has improved tremendously as it responds to Biologic drugs, specifically anti TNF's.
it took me 4 years to get my spondyloarthropathy diagnosis, I am HLA B27 positive and that result helpd clinch my diagnosis as I have an atypical presentation which is complicated as I also have overlapping Behcets syndrome ( a rare form of Vasculitis ).
Fell free to ask me any questions, I hang around this forum occasionally as I also had an equivocal ANA at one point and a ? Lupus diagnosis. I know a few people that have spondyloarthropathy overlap with another auto immune condition.
in reply to
Hello and thank you for replying. This is very helpful - as I said in my post above this is the first time I have ever been referred to a specialist even though I have been saying for years there is a problem and so I want to make the most of my appointment - I even knew it was auto-immune. I always described it as "my body is attacking itself". My maternal aunt has lupus, 2 maternal aunts have fibro, my sister has identical symptoms to me, my cousin died of rheumatoid arthritis aged 7 (heart issues caused by the RA) and my mum remembers my nana "taking to her bed" when my mum and aunts were children. Eventually when you have been fobbed off for so many years you start to wonder if you are some kind of light weight, maybe it is all in your head (as our family GP told my father when I was in my early 20s, who ever since has been very dismissive of my symptoms - thinks I should pull myself together). Sometimes I wish doctors could just admit they don't know everything!!
Sorry to hear that you have been putting up with these symptoms for so long without a confirmed diagnosis. Good luck with your rheumatology appointment. Let us know how you get on.
You may want to have a look at the National Ankylosing Spondylitis Society (NASS) website, which also has a forum for members - nass.co.uk/members-area/mem... they may be able to give you more information about HLA-B27.
If you want more information about lupus and how it is diagnosed, we have a free pack which you can download or request from our website at lupusuk.org.uk/request-info...
explains it quite well in understandable language.
You are describing a history of an undiagnosed autoimmune disorder, very probably triggered by the glandular fever - and now you are going to get the chance to describe ALL the symptoms when they take your medical history at the first appointment. So make a note of them, carefully and together with your husband, and hand it over to the person who takes the history. Try to add dates if you can, approximate is fine over such a long period. See if you can classify them under general headings; skin, joints, systemic (poor temp regulation/sweats, fatigue and so on). Take at least 2 copies so you can give them one and use the other as a prompt for yourself.
And to cope with the GP "which problem" nonsense (whatever happened to holistic care) - take him with you (I like people who cut to the chase) and say "I'm here about the autoimmune disorder I seem to have that you haven't concerned yourself about so far". No wonder they can't make diagnoses if you can't tell them all at once that you have fatigue, rashes and joint pain...
Thank you for replying - these suggestions are invaluable. I've got to get my head around being able to list all the symptoms after so many years of seeing the eyes glaze over when I have started to tell my GP. Around 20 years ago I had a test done at Addenbrookes - I can't remember exactly what it was, but I seem to recall I was injected with something radioactive maybe? or possibly I swallowed it and then my stomach and bowel area were scanned. I distinctly remember the woman who performed the scan saying that my white blood cells were "going crazy", she had never seen anything like it and I asked her what it meant but she said she only did the scans so she didn't really know - and yet there was never any explanation forthcoming from anybody. So 20 years ago, white blood cells acting weird, yesterday find out have some gene that affects your white blood cells... Funnily enough at the GPs yesterday as we went through the bloods my husband asked why some were pink and was told that meant an abnormal result. So he said, but there's loads of pink there and you are skipping them - turns out they were the last bloods I had done (2009 and 2010). I've always been told that my bloods were normal - whaaaaat? Husband has said we need to ask for print out of all these results to see for ourselves. Even he (after 11 years of marriage) was starting to get a bit "hmm, is it in her head?" (he says he wasn't but think he was!) but after coming with me yesterday he said "Karen, you really have been being fobbed off all this time!"
If you get copies of your notes from the GP and establish you have had abnormal results ignored in the past - do consider making a complaint. It isn't good enough and there is absolutely no excuse. Both I and my husband worked in the NHS so are very supportive of them and their problems - but his immediate response to something I told him earlier (not your stuff) was: Report it to the BMA. There are things that must not be ignored - and to do so is malpractice.
Hi karen, I have also been diagnosed with Ankylosing spondylitis, my symptoms began in my 20's but I didnt receive a full diagnosis until this year, I am 60. I also have RNP with antibodies and receive prescriptions for vitD.
I am no longer on Indocid, for inflammation of the joints as I was advised to follow a no wheat, low carb diet. This has relieved any joint pain and stiffness that I once had.
As I have three members of my family with severe symptoms of AS i decided to be find out more, so in the 1980's I went to a symposium at my local university on ankylosing spondylitis, sufferers there advocated exercise when you feel the burning sensation or mobility problems. I swim, walk and ride a bike, this light exercise also goes a long way in relieving those more painful symptoms.
YouTube has also been useful for low impact, non ballistic exercises and dietary advice.
Thank you, yes it is very helpful thank you. My mum has suffered back problems, my sister describes the same symptoms as me. There is also a number of family members with auto-immune problems - aunt has lupus, cousin had RA, nephew has coeliac disease. My mum always said it seems to be genetic - and now it seems we have found it is! I have previously done a lot of yoga - do you know if that is beneficial? Ironically I have not done it in a good few months as my neck was hurting so much!
I have HLA B27 and have had a lot of back pain for many years. I also had a lot of lupus symptoms. The rheumatologist I saw in the 80s wrote in his report that he was surprised I had HLA B27 but since a certain portion of the population has it, it should be possible I had lupus and HLA B27. Meanwhile, people with lupus are not supposed to have back pain. It was supposed I had fibro, too. Recently, I had a MRI of the sacrum just to see if there was any sign of AS, but there isn't anything in the MRI that suggests that. I'm going to have a MRI of the thoracic spine to see if they see anything there. I'm going to be 64 this month and I do have two wedge fractures in the lumbar spine, although that isn't really where it is hurting. I don't know if that is any help, but it is true that not everyone that has HLA B27 has AS, and it is harder to diagnose in women.
Also, regarding going to the doctor, I'd leave off mentioning anxiety, because doctors tend to attribute everything to that.
Hello thank you for replying. Yes - either anxiety or depression - mention either and you are stuck down a dead end it seems!
The GP gave me the impression this result meant AS - it wasn't until I googled and spoke to you good people that it became evident it isn't as clear cut as all that! Still, I'm being positive and thinking this is another step in the road and it is further than I have ever been before
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