Hello everyone. I've just been to see my GP(just returned from her maternity leave) and she produced a letter I have never seen from the Rheum I saw 8.10.14 .
He says I'm HLA-B27 positive and spondyloarthritis.
So unsure wether I have PMR! GP still thinks I have.
Does anyone know anything about the above?
I get so much from this site can I please stay as a 'maybe PMR er' ?!
I don't think we cross examine people as to their diagnosis!!!!
Hmm - the rheumy I saw was desperate to make me spondyloarthritis - until tests proved it wasn't! However - yours suggest you might be although as I understand it, you can be HLA-B27 positive and NOT have a particular one.
Arhtritis UK has an excellent article but it is aimed a professionals and students:
arthritisresearchuk.org/hea...
Quite a way down the page is this:
"Undifferentiated spondyloarthritis
Patients who have some clinical features of the conditions discussed but do not meet specific diagnostic criteria for ankylosing spondylitis, reactive arthritis, psoriatic arthritis and enteropathic arthritis may be diagnosed as having undifferentiated spondyloarthritis. Patients may have symptoms suggestive of inflammatory back pain or have an asymmetric synovitis in addition to either a positive family history, or the presence of psoriasis, iritis, inflammatory bowel disease, enthesopathy and/or radiographic evidence of sacroiliitis or a recent history of acute diarrhoea, urethritis or cervicitis.
Management is determined by the severity of disease. In addition to symptomatic treatment with analgesics and NSAIDs, a monoarthritis will usually be managed by intra-articular steroid injection whereas polyarthritis will often be treated with pulse steroids and sulfasalazine or methotrexate."
PMR is a symptom of something going on, it isn't the disease itself - for most of us it is an underlying autoimmune disorder and it responds to pred. That last paragraph suggests that in non-specific spondyloarthritis you would be offered "symptom management", which is just the same as in PMR. Did the pred work wonders for your symptoms when you started on it? If so, that's the answer. If it didn't, maybe that is why and the other options might be worth exploring.
This is an information sheet from Arthritiscare aimed at patients so it is much simpler:
file:///C:/Users/d.k.harrison/Downloads/SpondyloarthritisFactsheet2014.pdf
What did your GP say she was going to do? At the end of the factsheet they suggest sitting down with your GP and discussing what to do - you've already seen a rheumy and he's done his bit. Then they have other suggestions - people in one region with PMR were told they couldn't "borrow" the hydrotherapy pool the arthritis lot had funded, we're the poor relations and I don't think a lot of rheumies take us seriously. I, by the way, would be enquiring why, since you hadn't been sent a copy of that letter, why you haven't been told about it before.
Do tell us what happens!
Food for thought. I saw a dreadful Rheum who didn't have my notes and fell asleep! So my GP being off, lack of complete notes and a useless Rheum (not the one who wrote letter) meant I had no idea until today.
My GP wants me to reduce steroids;they've given me oral thrush. And once reduced have another scan.
Many thanks
What effect dis the pred have when you started - sorry, I'm sure you have said but I can't remember and I can never find anything on this site!!
I started on 20 March 2014 and I was like the bionic woman walking for hours; it was great
Dr took me down to 17.5 and I became a bit psychotic! So on to 15 then gradually down to 5 which did nothing for me and 3 weeks ago back on 15 which helps apart from sore throat/tongue/chest malarkey
Well, that seems a fair indicator that there is something that sorts it out - what dose was the lowest you were OK at?
15
Ah - which is where the response deviates from "typical" PMR. I wonder what you'll end up on - there are options.
Hi Brightonbella,
Hello from another person positive for HLA B27!
I am no means an expert but let me tell you what I know about it.
10 % of the population carry the gene.
90 to 95 % of patients with ankylosing spondylitis ( AS ) and less so for other spondylarthopathies will be HLA B27 positive.
No reputable Rheumy will give you a diagnosis of AS on a positive HLA B27 result alone.
AS can present with Polymyalgic symptoms ( hip and shoulder pain ) . It is more common in young males but can present in older females in atypical ways ( ie polymyalgic presentation )
AS responds poorly to low dose steroids and usually responds fairly well to NSAID'S ( eg Ibuprofen etc ).
To say definitively whether AS is causing your problems I would recommend seeing a Rheumy who specialises in AS. You will probably need a special MRI of your spine to confirm or deny the diagnosis. AS can cause all sorts of systemic problems, it's not just a " sore back " and sometimes doesn't present with back pain at all!
I hope that has helped. If it is AS then a type of biologic drug called anti TNF's have revolutionised the treatment of it, no more dreaded pred. Please feel free to PM me for more info.
Regards
Keyes
Thx Keyes I'm starting to get my head round new diagnosis. I've never had a bad back; neck though is awful.
Bit miffed I've been on Pred for so long for no reason!!!
Thanks for your help, kind of you
The problem is that a lot of these auto immune conditions share similar symptoms.
I originally presented with bilateral hip and shoulder pain, weight loss, fatigue and thoracic spine pain. I improved with a little with low dose prednisolone and then developed headache, blurry vision and jaw pain! In many ways these are all classic PMR/ GCA symptoms but I never responded in the classic way to high dose prednisolone ( including IV methyl pred ).
I now have a diagnosis of possible Behcets ( a very rare type of vasculitis ) with a ? AS overlap as I am HLA B27 positive ( a recent finding ).
If you google polymyalgic presentation of Ankylosing Spondylitis and late presentation of Ankylosing Spondylitis it's really interesting and you may find similarities in your presentation. The Ankylosing Spondylitis charity has a very good helpline and will be able to give you the name of a specialist to enable you to get to the bottom of everything.
I am by no means saying you do have AS but I would have thought it would be important to fully rule it out. They don't like to use prednisolone to treat it because of the risk of oesteoporosis in the spine so the sooner you know ( and get off pred if you have to ) the better.
Good luck with it all. As with anything slightly complicated getting to see a real specialist ( not just a bog standard Rheumy ) should help.
Best wishes
Keyes
Ps
I wouldn't worry too much about hanging around the forum. They seem to tolerate me popping up every now and then as a non PMR person, well they haven't asked me to leave so far!
I like you popping up Keyes - mainly because I learn something from you most times you post! 
And you add a different perspective which is important to me at least.
I think though that in bella's case the rheumy has been a bit non-specific - AS is just one of the spondyloarthritides isn't it? A bit like GCA is just one of the LVVs (large vessel vasculitides).
I still think they all overlap - what you are diagnosed with depends on the items you got in the selection box and how it responds to what. And we need a new specialism: rheumovasculitis. Or at least, a hospital with both available to talk to one another. Oh yes - that used to happen didn't it...
I routinely ask for copies of all correspondence which refers to me in whatever context. You are entitled to copies so please ask. ATB
Can anyone tell me when the HLA B27 test came. My son was told he had ankylysing spondylitis 30 years ago and recently was told he defo does not have it. I had assumed he had misheard it in the past because of the lack progression in his back pain.
Hi paddyfields,
I think the HLA B27 gene was discovered in the 1970's but am not sure when it was " rolled " out into general use for patient testing.
Thanks for that Keyes
confused
Confused
Confused and exhausted.
Covered in confusion!
