Quantcast

Living with Psoriatic Arthritis (PsA)

Pain is not a good indicator of disease activity

#1

… and evidently lack of pain is not a good indicator of disease control either.

I’ve just received a copy of a letter my rheumy has sent to my GP, with results of x-rays taken in January. The x-rays show erosive disease over the 3rd, 4th & 5th metatarsals of my right foot and in some other areas too.

If anybody had asked me to identify one part of my body that probably wasn’t much affected by PsA, my right foot would have been near the top of the list. It just doesn’t hurt that often, it works fine, it’s the left one that annoys me most.

There is now a question mark over how well Humira has been working. I’ve recently started the biosimilar, Imraldi - with luck it’ll step up to the mark.

I already knew that pain isn’t necessarily indicative of what PsA is up to and unfortunately these x-ray results illustrate that quite clearly. I really would not want the erosion to continue unabated, I’m pretty sure that badly eroded metatarsals would make walking very painful or even impossible.

3 Likes

#2

Thanks for this information. That is the kind of thing I worry about. I had talked about this before in that pain and the disease or other possible indicators of personal measurement could be moot. I am sorry this is the case for you.

1 Like

#3

Hi Woodworm.

I think you’re wise to worry, or rather to be aware. I keep looking at my right foot and calling it bad names, the sneaky so & so! I should have known that sneakiness is a byword for PsA!

2 Likes

#4

Keep in mind… What we call damage (and it is) is often times the body trying to protect itself. This whole diseases is our immune system OVER reacting. In a sad sick way damage is more likley to occur “in the good parts” as a result of our immune systems preparing to do battles.

3 Likes

#5

Right. That’s um, well, bloody awful news. I’m seeing my ‘bad’ parts in a whole new light!

(Edit) There again, don’t joints that PsA is going for usually show some signs? If we show a rheumy a place that has no swelling, no pain, no redness, no stiffness they quickly move on.

I suppose I should mention that my feet are stiff as iron flippers in the morning, but requests for more imaging of feet and hands in general has previously fallen on deaf ears. Carpus on left hand also shows erosion and that area has been a little swollen for maybe 5 years, but the swelling has always been attributed to OA. No mention of OA at all in this recent letter.

1 Like

#6

Radiologists in my experience don’t understand rheumatology all that well, but they are getting better, at least in our area. They used to equate “degenerative changes” as being OA. Finally they are recognizing that “degenerative changes” are just that “degenerative changes” that can have many causes. They are leaving the causes up to someone who really knows what they are doing. They were trained to look for “pencil in cup” as being PsA. By the ie THAT shows up, its too late, trouble is far too many Rheumies have been brain washed into believing the Radiologists are the imaging experts while they should use imaging as only one piece of data and depend on their training and experience to determine what is and is not the result of PsA. degenerative changes are a gradual and ongoing change, Your body doesn’t decide one morning, “oh I’m gonna start getting old today” aging is constant not something that happens one day and stops.

2 Likes

#7

I think I understand everything you say, it’s always worth reading your posts several times.

This was the first time I’d had x-rays in the Royal National Hospital for Rheumatic Diseases which is where my rheumy is based. So there’s the possibility that first rate people were involved every step of the way, from the way my feet & hands were positioned for imaging through to my rheumy’s interpretation.

Perhaps some previous changes should have been taken more seriously, particularly those which were not at all gradual. Though I guess the most clearly rapid ‘OA-type changes’ occurred before starting treatment & slowed thereafter. And they occurred after a couple of months of inactivity in joints that had been swollen for a very long time. But anyway I am where I am.

I think that there’s a fairly rigid line, over here anyway, between the use of the words ‘degenerative’ and ‘erosive’, at least in discussion with patients. The different words may not have clear significance scientifically but this is the first time that changes have been taken as evidence that my arthritis has worsened since I’ve been on the biologic. I think when I next see my rheumy I’ll ask ‘what makes these changes different?’ It’d be good to hear her view.

I’d already started to feel much greater confidence in my rheumy team before this letter arrived, and obviously that helps. I’m taking my meds as conscientiously as usual, but suddenly with greater enthusiasm.

When I went down into the hospital basement to the x-ray dept. there was a section of Roman mosaic pavement cordoned off at the bottom of the stairs. Some things hold up pretty well it seems.

3 Likes

#8

Stupid question here as I’m sure we’ve discussed this before but what is the difference between the damage in a joint caused by OA and the damage in a joint caused by PsA? Surely if a joint is inflamed by PsA, it’s going to erode similarly to how the wear and tear of OA erodes a joint? In that the damage to the bones of the joint are eroding similarly?

In otherwords if we had two xrays of two people with a problem in their left knee, for example. One of those people does not have an abnormal immune system but needs a joint replacement due to OA and the other person has PsA and needs a joint replacement due to the damage the PsA inflammation caused. How would the films differ in the joint damage in both patients? Or would they differ at all?

There seems to me to be an awful of people here and elsewhere with PsA being told x damage to a joint is OA and x damage to another joint is due to their PsA being uncontrolled but I’m not at all sure like @Sybil says with an abnormal immune system there is damage caused by solely OA. It seems to me that it would be almost impossible to tell that the damage is only caused by OA in a patient with PsA.

So taking that one step further based on the fact that you say radiologists don’t really understand rheumatology, all this OA that so many PsA patients have been told they have is most likely just nonsense isn’t it? It’s just rheumatologists relying on what the radiologists say when the radiologists are just wrongly thinking damage is caused by OA when it’s not, it’s caused by uncontrolled PsA inflammation instead.

Or is that too black and white, since nothing is rarely so black and white anyway?

1 Like

#10

Hi Poo,

I know you addressed your question to tntlamb, but just my twopenny worth …

I think the fact is that people with PsA will get OA at the same rate they would have done without it. Maybe more so if, for example, muscle-wasting caused by inactivity makes joints more prone to OA by exacerbating the ‘wear & tear’ process.

And the other fact (one that some medical professionals have confirmed for me) is that people with PsA are also likely to get OA that is purely and simply caused by PsA - secondary OA in other words. I recall tntlamb saying that ‘all sorts of things happen in joints that are affected by PsA’ or words to that effect! I attribute the OA in my knees to PsA because they were swollen for so long, and so do the medics, we agree on that at least!

I’ve been looking at radiology articles and erosion looks different and is more strongly associated with the inflammatory process.

This will all be a massive simplification no doubt! Or just plain wrong. It’s what passes for my ‘working understanding’ of these matters.

(There will be a deleted reply to you above, we had a power surge here and everything went peculiar!)

2 Likes

#11

Yes we’re having weird power surges here too. This wind is truly something else of a storm, this morning.

0 Likes

#12

OA is the result of cartlige wearing away and bone spurs occur - Osteophytes. In PsA the damage occurs in the enthes are (remember there are two ends of a Tendon) Then there is a another factor called osteolysis in which case the bone in the joints disappears. (Called pencil in cup) now here is what confused me.

Anyone who has eaten a fried chicken leg knows there is cartlige surrounding the the tip of the bone Before you can get to the bone that’s gotta go. Why couldn’t they see this as the blew off my spine going to hell as age.

There never was much confusion before we got biological meds which slowed and most often stopped the osteolysis. Didn’t effect the breakdown of cartlige however. They could tell the difference because instead of osteophytes forming syndesmophytes formed. Both are calcification but are different.

OA is pretty much intretable except joint replacement and roto-rooter sessions Of course by the time they figure out “oh chit” I guess that disappearing cartlige was PsA after all, it’s to late… So finally they did a study (several in fact) the bottom line is that cartlige tends to disappear even when the osteolysis and enthesitis is under control and generally the source of pain. Treatment helps.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4269795/the

5 Likes

#13

The roof has blown off the big Tesco store here. B&Q is closed too and so is another one … a lot of people lost for what to do with their Sunday! Nowt whatsoever to do with OA & erosion of course. Cheered me up in an apocalyptic sort of way though.

2 Likes

#14

Cannot access link …

1 Like

#15

I had ultrasound and some nerve conduction studies done back in November on my hands and feet, due to numbness and irritation in nerves in my left hand and both feet, particularly my left foot.
I was really surprised to get the results back, which showed thankfully little to no nerve damage in all joints… except my right hand which out of all of my four ‘paws’ is the least bothersome, if at all… showing my symptoms don’t mean jack with regards to joint damage. My rheumatologist did offer me a steroid injection for my right hand but I turned it down, I don’t really see the point when it’s not particularly bothering me

3 Likes

#16

@tntlamb
Sorry but I can’t access the link either.

0 Likes

#17

That’s just bizarre. Is it possible to get referred pain ‘jumping’ from one hand to the other and the feet as well? I doubt it, but seems anything’s possible!

0 Likes

#18

Yes yesterday’s weather was sort of apocalyptic!

0 Likes

#19

Even without being able to access the link, that makes sense to me. So if I was being told as a PsA patient (as so many PsA patients are told) ‘oh dear that’s OA damage’ if we then asked ‘are osteophytes or syndesmophytes forming’ we might get a more sensible answer from our rheumies than ‘it’s just OA’. Mightn’t we? What irritates me on behalf many PsA patients (since I’ve yet to told anything in my body is just OA) is this distinction that the damage seen is ‘just OA’ when given the PsA diagnosis, that’s pretty improbable really, isn’t it? Depending naturally at what age PsA started for you.

1 Like

#20

My mom was told that the damage to our hands was just osteoarthritis for many years. Her fingers were basically destroyed before they realized that it was in fact psoriatic arthritis.

I know that for myself I was diagnosed at 36 years old. Many of my joints have significance joint space narrowing already. My hips are probably among the worst. And I received treatment fairly fast after diagnosis. My hips are actually acting up right now. And I’ve noticed that the range of motion on one of my hips is not complete.

2 Likes

#21

That word ‘just’ again. Hoping that degree of medical complacency is now pretty much history … hoping.

If OA was taken more seriously than it often is, more carefully considered and re-examined to exclude other possibilities, well that would obviously be a good thing for inflammatory arthritis patients. ‘Just’ sends me all the wrong signals.

I accept that I do have a fair bit of OA due to other causes, Ehlers Danlos hyper mobility type included from now on I think, as well as ageing etc. But I also think that any damage merits scrutiny just in case. There’s also the risk that anyone over 60 is assumed to have OA. Questioning that doesn’t mean that we’re in denial about ageing.

Is your joint space narrowing attributed to PsA Stoney?

0 Likes