Does anyone have psoriatic spondyloarthritis?

Hello,

I am doing some research into my PsA and attempting to find links between this and the chronic back pain I have had for many years. I was wondering if anyone has psoriatic spondyloarthritis, if so, what are the symptoms and treatment they may be having?

Thanks,

Nicole :blush:

Hi Nicole

Given the definition of spondyloarthritis …

What is Spondyloarthritis?
Spondyloarthritis is an umbrella term for inflammatory diseases that involve both the joints and the entheses (the sites where the ligaments and tendons attach to the bones). The most common of these diseases is ankylosing spondylitis. Others include reactive arthritis, psoriatic arthritis and enteropathic arthritis, which is associated with the inflammatory bowel disease.
http://www.arthritis.org/about-arthritis/types/spondyloarthritis/

… so I guess all of us here have Psoriatic Spondyloarthritis! PsA can be in your spine. Ankylosing spondylitis is a separate disease of the spine, with its own distinctive characteristics. How they distinguish PsA in the spine from AS in the spine I don’t know. But from the little I do know, I’m guessing it’s something about location and extra bone growth.

I’m curious: is your back pain mostly above the waist or below?

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Hello Seenie,

The term comes from an article I read in Rhematoligy Network. Here’s the definition, ‘Psoriatic spondyloarthritis forms part of the spondyloarthritis spectrum, between peripheral-only psoriatic arthritis and ankylosing spondylitis. Also, although it is less severe radiographically than ankylosing spondylitis, psoriatic spondyloarthritis has a similar disease burden in terms of most indices, according to results of a single-center, cross-sectional observational study conducted among consecutive psoriatic arthritis and ankylosing spondylitis patients’.

Here’s the weblink if you’re interested in reading the entire article http://www.rheumatologynetwork.com/news/psoriatic-spondyloarthritis-burden-similar-ankylosing-spondylitis

My back pain has been with me for just over 20 years. My disc from L3 to S1 have severaly degenerated, the facets now pinch the nerve endings and as a result I pretty much have constant lower back pain with sciatica at times. Range of movement in my spine is much less than it used to be and reduction in my neck movement has also become an issue. This together with PsA diagnosis which is active at the moment makes for very painful days.

So I am interested to know if anyone as you say has AS or PsA in their spine and the symptoms and/or treatment.

Nicole

It’s quite common, Nicole…I had pain and stiffness in my neck and lower back in my late 30s/early 40s. I had back therapy and the physical therapist helped me a lot…so much so that the pain and stiffness didn’t come back for at least 12 years. I really had high hopes I’d never have a stiff, sore back again! What a dreamer, eh? Sciatica seems to go along with the PsA back pain–stiffness is pretty much the norm. Since I’ve been on Enbrel, that stiffness is minimal–except I have problems with numbness in my left leg occasionally, and that happens usually when I lift something too heavy (I try not to lift over 20 lbs.). I don’t remember if you’ve started a biologic yet? I usually need to backup and read past discussions to remember these things about members (poor memory–brain fog).

Yes, that is very interesting. It’s kind of like a hybrid of PsA and AS.

Nicole:

So I am interested to know if anyone as you say has AS or PsA in their spine and the symptoms and/or treatment.

Many of us have PsA in our spines. Some of us have AS too (you know who you are, LOL).

I have degenerative changes in my lower spine (L4/5) but whether or not it is PsA or simply because I’m old, I have no idea.

Let’s see what others say!

Hello,

Thanks for replying. I am on methotrexate week number 6. So early days when it comes to treatment.

I really want to know some more about PsA in the spine or AS, as I’d like to take my thoughts on this to my next rheumatology appointment. I think there is a clear connection, but need to have a better understanding.

All the best,

Nicole

The classification gets confusing for us mere mortals. I can’t believe there are many folks with PsA whose spines are guaranteed to stay uninvolved. Someone who shall remain nameless (tntlamb) has posted about the classification and revisions of the classification and all I recall is that it’s all up for grabs.

Additionally degeneration in the spine is very common I believe, but that’s not to dismiss it, if I had to chose I’d probably prefer a big swollen knee from PsA in terms of discomfort to constant back pain from OA or something.

You can tell I’m a know-nothing. But I pick up bits & pieces. If I suspected AS I’d document morning stiffness, I think that’s intense with AS. And range of motion in the back would likely be poor I think. And I’d flag up my concerns with my rheumy, really emphasise them. I’m not sure what else you can do.

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Hello Sybil,

I have to say I agree, a swollen knee is much more preferred than a back that is constantly painful and goes into spasm at the mere change of movement.

Nicole

I had spinal degeneration on my X-ray at 36 - facet hypertrophy I think. Even at 36, that was considered normal. Those radiographic changes certainly weren’t the source of my back pain (which spontaneously resolved, to migrate instead to large and peripheral joints, then subsequently largely disappear once the old TNF was under control).

My limited understanding of the difference between spondyloarthropy and ankylosing spondilitis is in the literal sense of the words.

A spondlyarthropy implies symptoms affecting the joints of the spine. (Usually pain and stiffness, sometimes with inflammation).

Spondilitis on the other hand, REQUIRES inflammmation in the spinal joints (hence the itis). And to make it ankylosing, then there needs to be a process whereby two bones become one (e.g. fusion), or bone turns up where soft tissue should be. The most common process, as I understand it, is that ossification of the bridging ligaments (+/- tendons) occurs. So essentially, without new bone on X-ray, it can’t be ankylosing.

My understanding is that spondylarthropy is near-universal in PsA, spondylitis is common, and ankylosing spondylitis is an additional process which sometimes overlaps.

This is just my laymans understanding from what I’ve read - and diagnostic criteria and understanding of disease processes are changing all the time, so someone more knowledgeable than me can jump in any time :stuck_out_tongue_winking_eye:

Indeed. I said ‘in terms of discomfort’ though because joints that are definitely affected by PsA summon the spectre of ongoing & possibly severe damage even when they don’t hurt that much. Whereas as you doubtless know, degenerative changes may hurt like hell but the PsA drugs won’t be of use.

The question ‘degenerative or PsA?’ can be a real devil. So you just have to keep pushing to find out if your spine issues are inflammatory. In the UK progress to biologics should be quicker for patients with AS, if that does turn out to be the case.

**I have a curved back and a twisted back! Fine a good pain doctor and back doctor. For me it required opioids and a biologic that works. I’m on my fourth biologic, pray with me it works! **

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I have psoriatic arthritis with axial involvement. (Spondyloarthritis) I just had a visit with a new rheumatologist at U Penn and she gave me a great handout on treatment options - I’ll scan it and share when I get home today. But basically, there are only 6 drugs that effectively treat axial psoriatic arthritis, and of these, only 3 year the skin symptoms as well (Humira, Enbrel, and Cosentyx)

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And many of us have been blown off with “It’s OA, you have OA, I have OA, we all have OA” when in fact it’s PsA at work.

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Yes I have had it since 1982, my started with what I thought was a back sprain, that never went away no matter what, and progressiveally got worse ( pardon my spelling). In 2007 after seeing at least 15 doctors, I was finally told that Yes you do have spondyloarthritis, only they called mine Anklosing Spondylitis. Get to a rumy asap, because this only gets worse. Cought at an early stage, you hopefully won’t end up like me.

Simple answer we all do. Its sort of a new term which ids being modified to include Axial spondyloarthritis and Peripheral Spondyloarthritis. The new terminology is being pushed mostly by Advocacy groups (leading the pack is the SAA) trying to impart the seriousness of the disease. They think it gets confused with Grandmas Rheumatism too much

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I have. MRI and CAT scans show no real damage but enthesitis problems. It was really bad a few months ago but biologics are helping a bit. I find exercise hwlps with stiffness etc

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Just my luck.

All this talk about back pain and arthritis, I’ve gone and put my back out. Went to bed with it aching, took some extra pain meds. Woke up this morning with complete back spam with pain running down my left leg. I can’t sit or stand. Lying down only possible on one side and my joints just seizes up when I try.

It looks like it’s diazepam on the menu tonight. I just want to be pain free for one day. Boy, people don’t know how good life is without PsA.

Nicole :confused:

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Nicole, what a bummer. When I complained to my rheumatologist (she teaches residents while seeing patients) about the pain running down my leg, she snapped to the student, “Best guess?” Student said L3/4 (I think). Doc said that it’s probably not a PsA issue, but likely a disc issue. Too complicated for simple me. I go to the PsA Research Clinic next week, and I will, of course, tell them about my leg pain. Wonder what they will say?

Do you swim? I find cycling motions, floating and stretching in the pool very helpful. Even a hot tub helps.

Take care and take your meds, and I hope you’re better soon.

Previous posts have adequately covered the medical definitions so I am rather going to give a personal perspective on coping techniques and the real issues involved.
I am 65 years old,male and 6 feet 4 inches tall. I fractured L4 in a skiing accident some 15 years ago and have had serious PsA for the last 10 years with great difficulty in my hands and hips. The back pain is constant and dull but with episodes of ‘electrical storms’ that cause one to yell out loud! I need not tell readers about the pain that comes with PsA.
I have taken most of the medications but have steered clear of sustained pain killers. I push myself to keep active with a small business I run, Pilates and a mental exercises to focus on the pain and ‘contain’ its impact on the rest of my body and the depression that comes with PsA.
Joint damage is clearly going to be a consequence - now get audible grinding sounds from lower back on occasions - but it would seem to me that a positive approach and a forced regime of exercise is preferable to being forced into a more sedentary way of life.
The real causality is the effect on those around you - my long suffering wife who gets as little sleep as me and has to cope with the short temper and screams! No easy solutions here… just lots of positive plans to do things together even if, on the day, they prove impossible to do.
This sounds like an anti medication rant but is just my experience of where drugs have not helped; my reumetologist has effectively told me to ‘man up’ and I have decided to ‘go for it’ in the face of mounting pain and what seems to be a relatively fast decline in lower back mobility.

Hi Guy,
I have a son who’s 6’4" and has a crooked back…IDK why his doctors didn’t notice it when he had a routine scoliosis check as a pre-teen. I mentioned it to his doctor but he said it would straighten out–he was just growing too fast. Anyway, I can sympathize with you. Being so tall can possibly cause additional problems. Posture is sometimes a problem, IDK you, so not sure if that’s an issue.
I’m 64 and have had something like what you call ‘electrical storms’. It felt like an electrical shock and I never knew when it was going to strike! I had lots of other back problems over the years, but not from a specific injury–just wear and tear from doing hard labor that I should have left to the men.
What I wanted to tell you is I stayed away from meds, too. I only had prednisone a couple times and an occasional aspirin or Excedrin. But, it came to the point three years ago, I just couldn’t live with the illness of PsA–it was getting the best of me. I ended up going on a biologic, Enbrel, and it made a huge difference. I felt 80% better within days and my psoriasis cleared up about 75% within a couple weeks. My back ended up “going out” anyway, but it got better. You don’t realize the damage that’s happening while you’re not treating your PsA. You might not realize that until it’s too late. I wish I would have started Enbrel sooner…my back wouldn’t be so touchy and my feet wouldn’t hurt all the time. But, being on Enbrel now has protected me from further injury and helped me get through some rough painful times with my back and feet I wouldn’t be able to endure otherwise.

My rheumatologist told me if I was his sister he’d make me take the meds! Plus, when I joined this site, the moderators basically told me I was nuts (in a nice but stern way) for not taking them!