Ankylosing Spondylitis HLA B27 Negative

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My experience in the UK is that, if you have AS but test negative for B27 you will almost certainly not be diagnosed; no GP will take you seriously and even if the X-Rays show positive fusion of the sacroiliac after years of sacroiliitis, and you have related symptoms (e.g. spinal fusion, costochondritis, Crohn's etc - this will be put down to old age, even if you are, like me, in your early 40s - age of AS onset 24). I was referred to a rheumatologist (not a specialist in AS) who refused to take any blood tests/MRI etc as I was B27-; there are two AS experts near to where I live but as they are not in my catchment area (central London) I cannot be referred to them. I cannot afford to go private. However, I am on a Low Starch Diet and this relieves my symptoms to the extent that some days I wake up with no pain! I am desperate for a definite diagnosis as I constantly worry about my spine/symptoms but there is no one prepared to help. So much for the NHS.

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  • Posted

    Hi, sorry for the late post but i hope this helps, I am in my late 20s and was diagnosed with AS 3 years ago, i also like yourself are HLA-B27 negative, i was reffered to a rheumatologist who was a specialist in AS who reffered me for a MRI scan straight away, well i say straight away it took almost 4 years to be reffered to the specialist in the first place. An MRI scan is the only way you can be succesfully diagnosed and you must demand this from your specialist. The average diagnosis time for AS suffers in 3 years which is a disgrace and is purely financial reasons with NHS not sending people for a MRI scan.
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  • Posted

    I'm HLA B27 negative too - in my 50's, female, and can't get taken seriously by NHS. Classic history of AS from teenage years, family history of it, severe pain in SI joints (and other places), MRIs (brain and spine but not SI) have been done by neurologist so rheumie abnormalities not reported. I also have a fairly classic malar rash (as in SLE) but am seronegative on that. NHS rheumie has assessed for SLE and said no, but no-one has even considered AS, or done an examination looking for spinal movement limitations - in spite of the fact that I can't touch my knees, and my ribcage expansion is virtually nil. Have just got a new GP and have finally convinced them to do an SI xray, so hoping this will show up sacroiliitis - its my last hope. In the meantime I take maximum doses of NSAIDs, and loads of extra painkillers and struggle on. NHS has been totally hopeless for me - refuses to join up the multiple symptoms and signs of rheumie disorder and insists on focussing on the negative neuro findings, when the neuro problems are clearly secondary to musculoskeletal stuff. Also, our NHS area just won't refer out of area for second opinions.
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  • Posted

    I'm HLA-B27 negative, diagnosed with AS, not had an MRI, but received intensive special-angle X-Rays that clearly showed the problem. (I'm an ex-pat living in Southern California).

    For the relief of pain, I use a combination of DMSO and Topricin. DMSO comes in liquid, gel, and cream. The cream may be purchased with aloe vera or rose scented. I buy DMSO and Topricin from Amazon or Vitacost; not sure where you would get it from the UK.

    Alternative cures come in the form of Ayurvedic oils such as Maha Narayan Oil, and/or Flexn oil which can also be purchased online. These oils can be used in conjunction with DMSO as this acts as a carrier to allow deeper penetration of other creams or oils.

    I had a positive effect from a series of spiritual/hypnosis sessions which seems to have halted the disease.

    You have to keep exercising, even if you halt the disease, as joint problems still exist.

    The mainstream alternatives are drugs that suppress the immune system (preceded with antibiotics), and given my sensitivity, would probably have killed me.

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  • Posted

    I don't think I'm going to waste almost $50 on a 9-page book (leaflet) supposedly written by someone wearing a swat black 3 Hole Balaclava Hood Face Mask, a tee-shirt with KILLARMY emblazoned on the front, and a Bart Simpson doll on his shoulder! I’m not suggesting that this does not have some meaningful information, but I’m extremely skeptical. AS may indeed be conditional, attitude seems rather negative, as many diseases have an emotional or fateful (karmic) cause. That’s why spiritual hypnosis worked for me.
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  • Posted

    I deleted the post referred to above as this was a spammer posting in various discussions through the site.

    Regards,

    Alan

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  • Posted

    Hi, Ive got quite normal symptoms of extreme stiffness, pain down my legs worse on rest, morning waking, fatigue. I'back pain since sept 2014 with an easing of syptome over december but they came back. Im 21 and have had the Also have pain in wrists that has caused them to stiffen up over last two years. MRI showed sacroilitis. Had steroid injection in buttock which has greatly relieved pain but stiffness has been bad again last two days (steroid injection was 2 weeks ago.)Thankfully have physio tonight! Just got blood results back and hla neg, rheumatoid factor neg which have really confused me. Before these results rheumatologist thought was ankylosing spondylitis. Is this still likely to be case? Mum has incredibly similar back pain and wrist problems but also has finger and eye problems. Worried this will confuse the diagnosis (mum has never had a diagnosis of whats wrong/an effective treatment plan!). does it change the course of the disease/ treatment options if hla negative?
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    • Posted

      Hi Natasha,

      I'm sure by now you have learned a lot and probably aware of everything i will be writing but just in case i will write this anyways.

      MRI showing sacrolitis, all your symptoms of stiffness are exact symptoms of AS.

      Eye problems (iriits, uveitis..) are symptoms of AS.

      It is common that someone with AS will have a negative rheumatoid factor.

      I do have lots of other information regarding treatment if you are interested.

      I hope this may have been helpful and i hope by now you have received a proper diagnosis and are being treated or are treating it yourself properly.

      With Goodwill.

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    • Posted

      Hi, how did you get on? I've had exactly the same,had severe back pain for years, joint pain that gets so much worse in the clod, wake up every night in the early hours of the morning, stiffness that lasts an hour to an hour and a half, sitting for long periods hurts like a b**ch, am always tired, eczema, psoriasis, the whole damn works and my doctors have just told me I'm HLA-B27 negative and my inflammatory markers are negative. I'm still waiting for X-ray results and I'm waiting for an MRI referral but I'd be interested to hear how it went on for you. 

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  • Posted

    Hi, Ive got quite normal symptoms of extreme stiffness, pain down my legs worse on rest, morning waking, fatigue. Im 21 and have had the back pain since sept 2014 with an easing of syptome over december but they came back. Also have pain in wrists that has caused them to stiffen up over last two years. MRI showed sacroilitis. Had steroid injection in buttock which has greatly relieved pain but stiffness has been bad again last two days (steroid injection was 2 weeks ago.)Thankfully have physio tonight! Just got blood results back and hla neg, rheumatoid factor neg which have really confused me. Before these results rheumatologist thought was ankylosing spondylitis. Is this still likely to be case? Mum has incredibly similar back pain and wrist problems but also has finger and eye problems. Worried this will confuse the diagnosis (mum has never had a diagnosis of whats wrong/an effective treatment plan!). does it change the course of the disease/ treatment options if hla negative?
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  • Posted

    I'm in the US and on my 7th rhuematologist.  Everyone of them claims that I have fibromyalgia.  Duh, I have inflammation and bone swelling, stiffness, bone pain, costochondritis, high CRP, etc.  I don't have muscle pain and there is no inflammation with fibromyalgia.  I have been afflicted with this since I was 21 1/2  years old.  I am now 55 1/2 years old.  Started with my elbows then hands, shoulders, knees, feet, hips, lower back and ribs.  A year ago it began creeping up my spine to my middle back and wrapped around my ribs to where it hurt to breath.  Also the costochondritis hurt to breath or move.  My condition seems to have gotten worse since I have gone through menopause.  The only thing that fits this, especially with flatbone involvement is AS.  I've also had problems with my jaw and neck in the past.  I am also HLAB27 negative.  I also have autoimmune diabetes, thyroid and liver (PBC).  I'm hoping the Enbrel also staves off the PBC besides the AS.

    I started on Enbrel and the swelling in my hand went down.  My tailbone pain which started about half a year ago seemed to be getting better.  I had to stop injections because of an allergic reaction to the autoinjector in that they use a latex covering over the needle which is not necessary in my opinion.  A solid plastic cap would suit just fine.  I am waiting for the multiple dose vial as replacement.  I'm becoming so stiff in the spine.

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  • Posted

    Hi,

    i am 29

    Ive got quite normal symptoms of extreme stiffness, pain down my legs worse on rest, morning waking, fatigue. I'back pain for 4 years ago .

    MRI showed disc L5 S1. Had steroid injection THEN Epidural injectionin 9/2016  which have greatly relieved pain but stiffness has been bad again from 1/2017

    all of this were negative 

    esr

    uric acid

    and hla neg, rheumatoid factor neg which have really confused me. Before these results orthopedic thought was ankylosing spondylitis.  course of the disease/ treatment options if hla negative?

    recentally i knew about the fibromyalgia disease

    how can i detremind the diffrent between A.Spondlities and the fibromyalgia disease

    now i am using

    ani

    1-feldene flash 20 mg 1*1 -----piroxicam

    2-dexamethasone 8.mg inj 1 vail every 3 days for 3 time only

    3-meloxicam 15mg/1.5ml injection for 6days

    4-anti-inflammatory and anti-edematous 1*3 every day for 10 days

    how can we help each other

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  • Posted

    You do not need to be in their catchment area to be seen for an opinion. I don't have my hlab27 result but would guess I'm negative, as I have no family history. I am female, have had back pain since early 20s, but put it down to my career as a nurse. I was 46 when pains became unbearable and neck was stiff. After 2 years of seeing a rheumy who treated me for PMR, I decided to see an expert in pmr in Leeds ( I live in KENT), to check the diagnosis. She later referred me a colleague who is world reknowed in spondylarthropathy. By the time I seen her I had fusion of the SI joints, and ribs fused to spine, with neck fusing. The lan for some reason had not processed my blood test, but she still gave me a firm diagnosis of AS. I am 51 and diagnosed about 6 month ago.

    You could email these 2 experts giving a brief history and ask the question can you be hlab27 negative ( I know you can). They may confirm that you can be negative, you may be lucky and they will sugggest giving opinion. This is how I ended up in Leeds, so it can be done, it costs your GP roughly the same as a local appointment . Good luck.

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    • Posted

      Hi Maureen, do you have the emails for these two experts? I'm 26 and have dealt with issues from the age of 12, cutting a long story short after being diagnosed with nerve conditions there finally coming to realise there's a strong possibility it's AS. I've had bloods done a week ago but haven't had inflammatory factors done for some reason I'll be sure to request them. My Dr has written to me asking to see me once he received my latest pain management notes so this could be why. I haven't received my HLA B27 results yet but I'm assuming they will come back negative. I really wouldn't mind emailing the specialist who seen your for some advice if that's possible.

      I look forward to your reply

      Jayda xx

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    • Posted

      The specialist I seen was based in Leeds. Her email is . I would rather you didn't tell her I disclosed this email. I happen to work in the nhs, so have access to these emails. She was very thorough with me. I had MRIs of the spine and sacroiliac joints before I seen her, but I was under the care of a colleague of hers for 18 months who already suspected spondylarthropathy. I already had fusion show on the X-ray of sacroiliac joints. Have you had X-rays of these, generally you lie on your stomach to have these done, if you have not had X-rays done then you can ask your GP to request. Good luck 😁

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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  • Posted

    Hi. Sorry to hear that you are suffering with this with little help. I am 17 and am HLA-B27 positive and, hopefully, on route to some answers for my second round of consult with a rheumatologist. Hope it all eases in the future.
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