arthritis: is ankylosis spondilitis a form of... - NRAS

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arthritis

Luludean profile image
28 Replies

is ankylosis spondilitis a form of rheumatoid arthritis . I never get a straight answer.

can you have psoriatic arthritis as well as ankylosis spondilitis and sjorgens syndrome. If I ask the hospital helpline I just get told «  it is just blanket term , they come inder one umbrella. « 

This is without being seen face to face. On no medication at moment as biologic injections made me ill,

28 Replies
rmros profile image
rmros

Ankylosing spondylitis is a form of spondyloarthritis. Psoriatic arthritis is also a form of spondyloarthritis. You might have features of both.

Think of all these inflammatory diseases as being on a spectrum. Where you sit on the spectrum in terms of disease pattern and serology will determine your diagnosis. There might be a single cause, but it affects people in different ways sometimes leading to multiple diagnoses.

Rheumatoid arthritis sits somewhere else on the spectrum because it behaves differently, but might share some features with PsA and AS. Spondyloarthropathies, like PsA and AS, are a part of the spectrum, and you'll fall somewhere on the spondyloarthritis bit.

So yes you can have PsA and AS but that doesn't mean you have two separate conditions, it might just be that there's one disease process and it meets the criteria for both diagnoses. Sjogren's is slightly different but might be triggered by the same root cause.

Think of something misfiring in your immune system and the sparks going off in different directions, triggering multiple problems. Where the sparks fly will vary from person to person.

People tend not to get an ankylosing spondylitis diagnosis now unless they have ankylosis (where the spine starts to fuse). They are instead said to have axial spondyloarthritis (the AS charity even changed its name to reflect this).

I have a diagnosis of psoriatic arthritis but I also have bilateral sacroiliitis (a feature of ankylosing spondylitis). Nobody can tell me what the difference is between "PsA with axial involvement", and "axial spondyloarthritis". I just happened to be diagnosed on the basis of peripheral joint symptoms first, so I was told it was PsA. The spine problems were always there, but nobody would properly investigate them.

Fuzzy profile image
Fuzzy in reply to rmros

Very well explained! I have PsA which affects my lower back plus tendons. x

RAexperiences profile image
RAexperiences in reply to Fuzzy

can u tell me where in lower back u get your pain and which tendons are involved please? Thank U!

Fuzzy profile image
Fuzzy in reply to RAexperiences

Hi I get general pain in my lower back and stiffnes, hard to pinpoint as the back pain is mild.

Bigger issues for me are: all over body stiffness...I seize up a lot like the tin man! Tendon wise it is my achilles heel area and the area between thumb and index finger plus the outer areas of hands - so inner and outer area. Hope that makes sense. Take care x

RAexperiences profile image
RAexperiences in reply to Fuzzy

thank you so much for clarifying that. I appreciate it!

Charlie_G profile image
Charlie_G in reply to rmros

The usual difference between PsA with axial involvement and axial spondyloarthritis is history that supports psoriasis. However, that’s not clear cut given that some people get PsA prior to ever developing skin or nail features. The relevant history includes first line relatives with previous psoriasis, though. I had a single patch of psoriasis on my leg in my mid teens that lasted 12 months, but my dad has had terrible psoriatic toenails for decades. My diagnosis is PsA with axial involvement, as my first ever flare was my SI joints, but for 10 years I was told it was just a ‘weak back’, and it took me a further 10 years after that to actually get a diagnosis. SI joint involvement is common in PsA. The one thing other than skin involvement that will sway medics towards a PsA diagnosis is dactylitis.

rmros profile image
rmros in reply to Charlie_G

It's interesting because I don't have skin psoriasis. I have mild nail psoriasis and a weak family history of psoriasis. This helped clinch a diagnosis when the serology wasn't backing up my symptoms. However, psoriasis (and uveitis come to think of it) are both linked with AS too.

I think my spine problems precede everything else by a long way, but they never got investigated until I had peripheral joint problems 15 years later. Then of course, as a woman in my mid-30s, they were looking for signs of RA and evidence came there none.

I kept saying "But my back, my back" and was repeatedly ignored *until* I finally got the PsA diagnosis. Then they suddenly realised my spine complaints might be significant and decided to investigate. So that's why I'm reticent to believe my diagnosis is based on presentation more than profiling.

RAexperiences profile image
RAexperiences in reply to rmros

i feel quite frustrated with the whole thing. I have never had psoriasis and am not aware of a single family member with psoriasis. My rhumi seems to be leaning towards PsA now more than seronegative RA. I always felt PsA made bit more sense cause my fingers and toes looked more sausage-like. I never got “pitting” of the nails but when my big toes (which have been diagnosed with OA in big joints-pretty much fused) were very painful and swollen suddenly my big toe nails which were gorgeous turned yellow, twisted and started to lift from the nail bed. I was shocked. Resolving on biologics. Going back to normal. Tested negative twice for fungal. Kept saying to my rhumi “what about my back? It’s killing me”. If not working or excercising I’m lying down trying to decompress it. She kept saying no, not related (had two disc surgeries). Plot twist, I went on Adalimumab and poof, my back pain was gone! So that really got me thinking…went off Adalimumab cause gainined 22 lbs, and lipids were going up and didn’t want a new problem. Adalimumab also dramatically lifted my fatigue. Still stiffness in toes and fingers tho. So I’ll see where this all goes and this entire discussion has been super enlightening and gave me lots of food for thought. I wanted mri of sacroiliac but rhumi said no, u feel better! Rrr. So I’ll ask gp for xray instead. I am evidence/based so more info I have the better. My uncle had severe RA. I focus also on plant-based eating (plus fish) and lots of exercise.fortunately I can move. I can’t believe how enlightening snd supportive this site is and just grateful you let Canadians sneak in 😊 thank u so much everyone!

Dottie11 profile image
Dottie11 in reply to rmros

Can we send this to every rheumy in the land. Not sure all understand this. Excellent piece.

RAexperiences profile image
RAexperiences in reply to rmros

excellent summary thank you! Can u explain what sacroiliacitis feels like and where exactly the pain is please? Do u slso struggle with tendonitis and bursitis of hips or shoulders? Thank U!

rmros profile image
rmros in reply to RAexperiences

I feel it mostly in my right hip and very low down my back. It's deep in what we'd think of as the hip area, not in the groin so much (where I think true hip pain would be felt).

Sleeping or sitting down for long periods will trigger it when it flares up. When it wakes me at 4am I'm not very sentient so it's hard to describe except it's agony. It burns, it squeezes, it stiffens, it gnaws.

I get tendonitis - I suspect that's the cause of my current shoulder pain. I think I've had bursistis once.

RAexperiences profile image
RAexperiences in reply to rmros

thank you so much for that kind and helpful response. Sounds miserable! I sense I have PsA rather than RA. Perhaps with the spinal involvement. My low back (not low as sacrum) felt like it was going to crack in half and hips i couldn’t sleep on. Rheumi said bursitis. I have bursitis of shoulders and lots of tendon issues in shoulders and bit in fingers. This all really has me thinking…I’m going to research this. My HLA was negative for PsA tho. I don’t have gnawing burning feeling tho. Thanks so much for your help!

Charlie_G profile image
Charlie_G in reply to RAexperiences

HLA isn’t particularly relevant for PsA - the majority of PsA patients don’t have the antibody, including myself. Recent studies suggest that only 20 to 35% of people with PsA are HLA positive, versus 80 to 95% of people with ankylosing spondylitis: it’s primary use is to assist in the differential diagnosis between PsA and AS, not as a diagnostic marker for PsA itself. I was originally told my first hip flare was bursitis, but we now know that wasn’t the case at all.

RAexperiences profile image
RAexperiences in reply to Charlie_G

so helpful Charlie thank u!

Pasjc profile image
Pasjc in reply to rmros

great reply x

madme1 profile image
madme1 in reply to rmros

If you dont mind me asking what is psoriatic arthritis please. I have rhuematoid arthritis mum had osteoarthritis and my elder brother has spondyloarthritis.

rmros profile image
rmros in reply to madme1

Psoriatic arthritis is another type of inflammatory arthritis that affects some people with the skin condition psoriasis (which is really more than a skin condition, it's an autoimmune disease itself). Or, like me, people with a family history of psoriasis.

Psoriatic arthritis (PsA) shares some similarities with rheumatoid arthritis and several differences. Both cause joint pain, stiffness and fatigue. Many of the same medications are used for both conditions.

helixhelix profile image
helixhelix

you’ve had great answers about the comolexity of diagnosing these diseases.

But my question is what DMARDs and biologics have you tried, as leaving you with no treatment is just wrong unless all avenues have been explored. There are 4 different tyoes of biologic and just because one tyoe didn’t work doesn’t mean others won’t either. You really need to challenge your doctors about finding a treatment for you.

Celticdancer profile image
Celticdancer in reply to helixhelix

Good luck in that one. My Rheumatologist is an idiot and wanted to put me on a biologic when she hadn`t even seen my recent scans of my spine to compare with scans I had done 5 years ago. I said no to biologics outright as I don`t want to increase my chances of getting cancer and infections after reading articles on medical journals about Biologics and their effectiveness in treating AS which is only effective in 30-40% of AS patients.

My back is not that bad as I haven`t had much pain in my back only when I`ve strained it. I`ve heard about silent inflammation but the way I look at it is if I ain`t feeling it, it`s not happening.

The NHS will completely collapse at some point and it will be private health insurance or something of that ilk that replaces the NHS. Biologics roughly cost £1000 or more a month in the UK. The government doesn`t want to waste that kind of money on the likes of us, they`d prefer us dead as then they can save loads of money and we`re out of the way as the dead don`t talk or they want us at least at home suffering as it doesn`t cost them anything.

I manage my AS, inflammatory arthritis and osteoarthritis by eating anti inflammatory foods like carrots, beetroot, celery, goat`s milk and goat`s cheese etc and avoiding processed, refined foods, like junk food, white bread, white rice, white flour etc. I also take fish oils, krill and other regular vitamins and minerals to keep me in good shape and I also exercise every day and keep a positive attitude to my disease.

My rheumatologist has shown me kindness though, I should be really grateful as she said I`m the lucky winner [didn`t even need to enter the reader`s digest] of another MRI scan of my spine in a year`s time. I won`t hold my breath as the NHS gets worse week by week.

I thought about getting another rheumatologist but hell its that bad in the NHS, I don`t even care anymore.

cochrane.org/CD005468/MUSKE...

helixhelix profile image
helixhelix in reply to Celticdancer

” no to biologics outright as I don`t want to increase my chances of getting cancer and infections after reading articles on medical journals about Biologics and their effectiveness in treating AS which is only effective in 30-40% of AS patients.”

Seems a shame to not have even tried them, as you could have been in that 30-40%. One can always stop if they don’t suit. And yes there is an increased relative risk of cancer, but when you look at the absolute risk it is minute. Probably no differemt from (eg) living beside a busy road. I don’t have AS, but personally the biologics have already given me 4 years of much improved quality of life. And hopefully many more!

Celticdancer profile image
Celticdancer in reply to helixhelix

I don't play around with my health and I'm working class, don't have much money and live on my own so if things go wrong due to side effects from these very strong immunosuppressant drugs I'm more or less dead anyway as I don't have anyone to look after me. Not asking for sympathy just telling it like it is.

Nobody here cares about me so I have to look after myself to the best of my ability. If other people want to take the biologics that's their choice and their quality of life. I can understood why they take them especially if they're in agony.

I'd rather have a bad back than cancer or TB. That's how I see it. I personally want to see the NHS scrapped and this reliance on medications for everything be reduced as the downside to the NHS is the nanny state we live in where people are too over reliant on people mollycoddling them and relying on doctors to have all the answers.

The NHS is seen as the holy grail but it can no longer be saved. Yaron Brook explains why the NHS doesn't provide the world's best healthcare.

youtu.be/TTm6nLteFrQ

UK ranks alot lower than many other European countries for health care

dailymail.co.uk/health/arti...

helixhelix profile image
helixhelix in reply to Celticdancer

What has being working class got to do with it?

I take the opposite view in that I have no children and my partner is older than me so I need to stay as well as I can for as long as I can. And conventional medicine (including biologics) combined with attention to a healthy life style has done me well for years. I have tried without conventional drugs and it was hell. I eat a plant based diet that we mainly grow ourselves, exercise daily, and do everything I can to live as good a life as possible.

(I’ve had TB - not due to drugs but a gift from my father. I’m fine now).

Sarahg62 profile image
Sarahg62

hi. I’ve had RA for 40 years, but only recently tested positive for Ankylosing Spondylitits after many years of suspecting I had it

My Rheumy consultant says I’m complicated because I have a crossover of the two. They both come under the arm of Rheumatology.

There are many types of Arthritis, sometimes it just takes time to diagnose the right one.

RAexperiences profile image
RAexperiences in reply to Sarahg62

that is amazing (clearly not in a good way) but amazing. Glad you are getting clarity. Sorry I are living with it.

RAexperiences profile image
RAexperiences in reply to RAexperiences

you are living with it I mean…typo

Luludean profile image
Luludean

wow thank you ALL for so many informed replies. I am so pleased , I now feel I am not alone . I will reread and reply .L

Otto11 profile image
Otto11

Just throwing this into the mixture. I was initially diagnosed with sero negative inflammatory arthritis ? Psoriatic arthritis without Psoriasis or RA. After a few years it was decided it was sero negative RA. Then about 10 years later at an appointment the consultant was reading my notes & said so you have sero positive RA. I said no. She looked again & said definitely sero positive. No one even bothered to tell me my diagnosis had changed. To complicate things further I developed nail Psoriasis from one of the Biologic injection & had to stop them. I have always felt my symptoms have been more like Psoriatic than RA. A very stiff back included with frequent bouts of sacroilitis. I regularly see an osteopath.

I think what I’m trying to say is that there is often an overlap & diagnosis can change along the path of your journey. Hopefully in time you will get a more positive answer. Maybe not. I was just told treatment is the same for both. After 10 years Psoriasis free it is currently back attacking my nails. X

RAexperiences profile image
RAexperiences in reply to Otto11

very helpful. Thank you

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