How does your rheumatologist assess your PsA?

This is an area that I thought was fairly straightforward but the more I look into it the more confused I become.

There are all these different ways of assessing the severity of inflammatory arthritis including PsARC for PsA and DAS which is primarily for RA. Or at least I thought that the use of DAS / DAS28 was restricted to RA …

In the UK at least, these different systems come into their own when assessing whether biologics are on the cards. For example NICE, the organisation which determines the rules and guidelines concerning drugs, stipulates (or possibly just ‘recommends’) that PsARC should be used 12 weeks after starting a biologic to measure whether the response is good enough to stay on the drug. And because a baseline is required, the advice is to use PsARC to assess the severity of PsA before commencing biologic therapy.

Any of you who fancy practising a bit of home rheumatology might be interested in this poster which shows the joints tested for PsARC plus how to do it:

https://www.psoriatic-arthritis.co.uk/Assets/Files/Content/Rebranded_Content_/Rheum_Poster.pdf

Recently I’ve heard of people with PsA in the UK and elsewhere being assessed using the DAS system. It looks like the British Society for Rheumatology do not think that this is best practice, at least not in measuring response to biologics. This is an excerpt from their ‘2012 Guidelines for the treatment of Psoriatic Arthritis with biologics' entitled 'Outcome Measures':

'As stated above, the PsARC is the current recommendation for response assessment in peripheral arthritis. The ACR response criteria have also been shown to be discriminative in polyarticular PsA , but are generally too cumbersome and time consuming for routine clinical practice. Other composite arthritis measures have been validated in PsA. The EULAR responses, based on the DAS and DAS28 scores have been shown to be responsive in polyarticular disease but there are numerous concerns about their use in the general PsA population (i.e. lack of validity in oligoarticular disease or those with predominant lower limb involvement, remission cut off validated in RA but not in PsA , global disease activity may be influenced by other aspects of psoriatic disease [such as enthesitis, psoriasis, axial disease], PsA patients show a less linear relationship between disease activity and acute phase response).'

In other words, if DAS is applied to you, your feet might get missed off, you might falsely be declared to be in remission and specifically PsA things like enthesitis may not be taken into account. Anyone who can translate the last sentence has my respect.

Here's a link to the full article:

www.rheumatology.org.uk/inc...

This is a bit of a nerdy post I suppose but I’m sure most of us are interested in just how our rheumatologists assess our disease activity / severity. And sometimes we’re just plain mystified. As the poster shows, the main emphasis is on joint swelling and tenderness though there is some wriggle room where access to biologics is concerned in the ‘global assessments’ which could cover just about anything.

How does your rheumatologist assess your disease? In particular, do they consider pretty much all your joints? Or just the DAS ones which, notoriously, exclude the feet? And do they tell you what their method is even if they don't actually use the name of it?

My wonderful rheumatologist considers the whole person, including all of my joints. For that matter, when I saw him in December, he suggested some non-medical ways (continuing what I'm doing re: exercise, watching what I eat and adding meditation, eating more yogurt for the probiotics and something else I can't remember) ) for helping me get through the trial in April with as little damage as possible.

He's always been quite holistic He talks about the stresses of my job (public defender) about every appointment. I suspicion he also knows (from seeing Paul with me at every appointment and seeing us interact) that my marriage is happy.

That's what we all want I guess. It's impressive he considers the stresses of your job and offers advice for particularly testing times. I'd imagine you'd be likely to come up with some of those strategies yourself but hearing it from the expert would make me more determined to help myself in such ways.

Were there any criteria you had to meet for starting Humira, such as a certain number of swollen joints or 'failing' DMARDs?


sixcatlawyer said:

My wonderful rheumatologist considers the whole person, including all of my joints. For that matter, when I saw him in December, he suggested some non-medical ways (continuing what I'm doing re: exercise, watching what I eat and adding meditation, eating more yogurt for the probiotics and something else I can't remember) ) for helping me get through the trial in April with as little damage as possible.

He's always been quite holistic He talks about the stresses of my job (public defender) about every appointment. I suspicion he also knows (from seeing Paul with me at every appointment and seeing us interact) that my marriage is happy.

Mine must have gone to school with 6catL's rheumatologist! He's pretty holistic, too. I complete the usual pre-appointment swelling/fatigue/daily functioning chart before I see him. He examines my joints very briefly, checks my heart and lungs and asks me to describe any changes or specific concerns (weird swelling, unusual tenderness, etc.) which he then will look at specifically. I was wearing long boots and tights last time I was there and he didn't examine my feet (I offered) because I reported they felt a little better than last time. If I had pressed him he would have looked but at this stage of the game I doubt it really helps him or me if there are no changes visible or in tenderness. He asks about work, home, stress and travel and checks in about my general health and well-being. Then he asks if there's anything else I need, how my medications seem to be working and if I am concerned about them. While it is pretty routine for the most part I know he listens because he has shown that he is willing to change things up (treatment-wise) if I appear to be distressed, inflamed, fatigued, etc. I see him every three months.

Criteria I had to meet? Lemme see what my pea brain can remember. I began injecting MTX in September 2012. I know I saw him again in November and again in January. I have a vague November memory that he wanted Paul and me to think about adding Humira. I don't have a specific memory but I'm almost sure I would have told him I was still having GI side effects.He always does an exam but it can be different from time to time, other than he always looks at my hands and has me raise this and that.

I don't have a specific memory of the January exam but the January discussion was we would add Humira to MTX. I likely would have told him (again) that I was still having GI side effects because I definitely remember how miserable and depressed I was about never knowing when it would happen.

I had another appointment /bloodwork fairly soon after I began injecting and he said to decrease MTX because some of my levels were wonky (liver especially).

The next appointment I truly remember was in July 2013, after I knew I would be having shoulder surgery on August 23. we talked about when I needed to go off everything and made another appointment for mid-September. I do remember the September discussion being not to start with anything again and Dr. Abbas asking if Paul were cooking for me. I told him that my office was feeding us the first month but he was taking very good care of me.

I have a really good memory of the December 2013 discussion. When he come sin, he always asks "So, Julia, how are you?" (I love the way he says my name). When I came up for breath, he said I looked like I felt well. I told him the last time I could remember feeling that well was on our 25th wedding anniversary five years before.

That was the day I stopped MTX and began Humira every 10 days. How's that for a saga?

I think that, here in the states, the assessment relies more on clinical judgement than a predetermined chart. I’ve never seen that. It’s sort of a whole-picture view of the patient.

I think most people over here don't know about the criteria used to assess how severe their disease is or how well they're responding to a biologic. But the latter at least is quite rigid in the UK, at least on paper.

I've been digging around and I know I'm bound to get stuck in a hole at some point but anyway ..... looks like the criteria used to see how bad RA was started up about 50 years ago and that was ACR (American College of Rheumatology). It's still around and is sometimes used for PsA. It does take account of 66 or 68 joints, not the more miserly number of DAS ones. I wonder if the response criteria tools at least lurk somewhere .... influencing clinical judgement perhaps even if not controlling it?

Before starting on a biologic all that mattered to me was whether I met the criteria. I did manage to provide the magic number of tender / swollen joints plus quite a few spares. And then, at the 3 month check, I met the response criteria too. Phew! This obstacle course + the budget cuts over here can have negative ramifications to put it mildy. But at least we can find out what the assessment and response measures are and sometimes that really helps when people are not getting satisfactory treatment.

GrumpyCat said:

I think that, here in the states, the assessment relies more on clinical judgement than a predetermined chart. I've never seen that. It's sort of a whole-picture view of the patient.


It's great you've got such a good doctor who inspires your trust. It sounds as if he wouldn't let criteria get in the way of his clinical judgement. (Not that I'm saying it always works that way, sometimes these tools really help move things forward).

But I suppose that a patient requiring surgery for PsA-related damage (I'm making assumptions) would automatically qualify for biologics in any sensible system(?) Plus the GI and liver issues would constitute failing Mtx perhaps.


sixcatlawyer said:

Criteria I had to meet? Lemme see what my pea brain can remember. I began injecting MTX in September 2012. I know I saw him again in November and again in January. I have a vague November memory that he wanted Paul and me to think about adding Humira. I don't have a specific memory but I'm almost sure I would have told him I was still having GI side effects.He always does an exam but it can be different from time to time, other than he always looks at my hands and has me raise this and that.

I don't have a specific memory of the January exam but the January discussion was we would add Humira to MTX. I likely would have told him (again) that I was still having GI side effects because I definitely remember how miserable and depressed I was about never knowing when it would happen.

I had another appointment /bloodwork fairly soon after I began injecting and he said to decrease MTX because some of my levels were wonky (liver especially).

The next appointment I truly remember was in July 2013, after I knew I would be having shoulder surgery on August 23. we talked about when I needed to go off everything and made another appointment for mid-September. I do remember the September discussion being not to start with anything again and Dr. Abbas asking if Paul were cooking for me. I told him that my office was feeding us the first month but he was taking very good care of me.

I have a really good memory of the December 2013 discussion. When he come sin, he always asks "So, Julia, how are you?" (I love the way he says my name). When I came up for breath, he said I looked like I felt well. I told him the last time I could remember feeling that well was on our 25th wedding anniversary five years before.

That was the day I stopped MTX and began Humira every 10 days. How's that for a saga?

I'm thinking that there are several different approaches to treatment that go hand-in-hand, but while some may be influenced by tools, criteria or whatever we call PsARC, DAS etc., some aren't so much.

I gather that the response criteria tools were developed as more and more treatment options came on the scene, in order to help standardise judgement of how well they were working. PsARC was developed initially to measure response to Sulphasalazine. I guess that using some objective measures is particularly important with disease-modifying drugs, the DMARDs and biologics, because they come with certain very definite expectations and are expensive.

But then there are all the other things that can make such a huge difference, the steroid bursts or shots, NSAIDs and painkillers, personalised lifestyle advice and so on. And for those the holistic approach and understanding of the patient's life and state of mind are key.



janeatiu said:

Mine must have gone to school with 6catL's rheumatologist! He's pretty holistic, too. I complete the usual pre-appointment swelling/fatigue/daily functioning chart before I see him. He examines my joints very briefly, checks my heart and lungs and asks me to describe any changes or specific concerns (weird swelling, unusual tenderness, etc.) which he then will look at specifically. I was wearing long boots and tights last time I was there and he didn't examine my feet (I offered) because I reported they felt a little better than last time. If I had pressed him he would have looked but at this stage of the game I doubt it really helps him or me if there are no changes visible or in tenderness. He asks about work, home, stress and travel and checks in about my general health and well-being. Then he asks if there's anything else I need, how my medications seem to be working and if I am concerned about them. While it is pretty routine for the most part I know he listens because he has shown that he is willing to change things up (treatment-wise) if I appear to be distressed, inflamed, fatigued, etc. I see him every three months.

I have certainly noticed his clinical judgment in my various appointments. He walked in at my appointment back in August, started to say hello, saw my left foot, which I had propped on the edge of the exam table and *immediately* bent down to check it. I had noticed it was a little swollen, but it always is because I have "arthritic damage" in that foot, that Achilles and that plantar fascia. Frankly, compared to the way I *had* seen it, I didn't think it was that bad, but he did and basically turned my foot every which way but loose.

He did that at another appointment last year. I had raised one of my arms and he noticed an area of swelling along my wrist, so he turned it every which way but loose and asked about it. I told him I had been banging on the computer a lot, but just like my foot, I had noticed the swelling and didn't think it was that bad compared to the way I *have* seen it. He did.

At my appointment in October, I remember him asking Paul how long I hadn't been feeling well. We both must have looked surprised because he said you're not your normal self and haven't been since I walked in. That was the appointment where I suspicion that if I hadn't told him I planned to take time off the next week, he would have written me off starting that day--he was that concerned.

The shoulder replacement was the direct result of PsA related damage. I remember the second MRI on that shoulder (done May/June 2013?) showed chronic, cystic, arthritic changes. I had them send Dr. Abbas a copy but that was after I had already begun Humira.I was having serious trouble with my feet in late 2013 so he had a set of images done. Yep, arthritis damage.

I fell this time last year and tore my right rotator cuff (massive tear), but my new shoulder guy won't do the rotator cuff surgery. He says the only thing he can do and have any chance of success is a reverse shoulder replacement because the MRI on that side shows so much arthritis and arthritis damage. X-rays of my hips show arthritic damage, to the point where when my hip guy walked in and saw the x-rays, he said ouch. The right hip is worse than the left one and must be replaced sooner rather than later. Dr. Abbas has seen all those images and said all of that damage started in the six years before I was properly diagnosed and medicated. He agrees that replacement is the answer and the reason is PsA.

I remembered last night that one of the reasons why we added Humira was because I wasn't doing as well as he had hoped on MTX alone. I would think that factor along with the continued GI issues and liver wonkiness meant I did fail on MTX. I know there is no comparison with the way I feel now on Humira every 10 days v. the way I felt shooting up MTX once a week.

It’s very likely something that’s thought about, we have to have some was to judge progress. The actual references may not show up in the notes though.



Sybil said:

I think most people over here don’t know about the criteria used to assess how severe their disease is or how well they’re responding to a biologic. But the latter at least is quite rigid in the UK, at least on paper.

I’ve been digging around and I know I’m bound to get stuck in a hole at some point but anyway … looks like the criteria used to see how bad RA was started up about 50 years ago and that was ACR (American College of Rheumatology). It’s still around and is sometimes used for PsA. It does take account of 66 or 68 joints, not the more miserly number of DAS ones. I wonder if the response criteria tools at least lurk somewhere … influencing clinical judgement perhaps even if not controlling it?

Before starting on a biologic all that mattered to me was whether I met the criteria. I did manage to provide the magic number of tender / swollen joints plus quite a few spares. And then, at the 3 month check, I met the response criteria too. Phew! This obstacle course + the budget cuts over here can have negative ramifications to put it mildy. But at least we can find out what the assessment and response measures are and sometimes that really helps when people are not getting satisfactory treatment.

GrumpyCat said:

I think that, here in the states, the assessment relies more on clinical judgement than a predetermined chart. I’ve never seen that. It’s sort of a whole-picture view of the patient.

Sybil, I remember my first rheumatologist talking about the number of joints involved and other factors he used to determine my diagnosis. After that all my treatment options were based on a) what insurance requires (fail NSAIDs and older DMARDs before progressing to biologics) and b) my quality of life and c) the reduction (or lack thereof) of my symptoms while on all the various drug protocols I've followed. Since that first diagnostic counting of joints I've not seen either rheumatologist do that kind of thing again.

What led me to this was hearing about someone in the UK who was declared to be in remission after what seemed like a very short time on one DMARD. And that rheumy department was using DAS to judge response. The person is well-qualified to start getting an angle on their own disease and doesn't think they are in remission, unless the bar is set very low.

From what everyone says some form of criteria are invariably used to judge how well the disease modifying drugs are working, even if they're not writ large. But clinical judgement is all-important and when we see that in action we feel well-served. Seems to me that the criteria, useful as they are in standardising the approach, can be used badly, perhaps to save money as would certainly be my suspicion when this happens within the NHS. I'm hoping that's not too common an occurrence. And understanding the basis for such decisions can be helpful if we want to challenge them.

It'd be interesting too to hear from someone in Australia where I gather the protocols for accessing biologics can be quite complicated.

As you know, Sybil, I heard the same 'remission' garbage from my original rheumy team after a year on my second biologic.

This 'expert' pronouncement was made just a matter of days after a second opinion from one of the UK's leading PsA experts who found 29 tender and 7 swollen joints using the 66/68 joint count together with reduced flexion in my cervical and lumbar spine and tenderness and swelling over several entheseal insertions including both Achilles and both plantar fasci ... not to mention the crushing fatigue and severe psoriasis on my feet. Additionally great consideration was given to how this affected my day to day abilities and quality of life.

I changed rheumatologists, permanently. I have absolutely no idea what scale or if there was any scale in use in rheumy team one ... there certainly wasn't any continuity of care, five or maybe six different doctors and four or five different biologic nurses. I ended up having no confidence in their care at all so I agree 100% with you: seeing clinical judgement is all- important and seeing that in action leaves us feeling well served ...as I now do with my new rheumy.

You've certainly had it tough with joint damage. I often marvel at the fact that you don't let it stop you doing such a demanding job. I really hope that Humira is slowing down joint damage at the very least.

I've seen that eagle eye you describe. My rheumy just glanced at my knee at the last appointment and gave the verdict: 'a bit swollen'. It's my knee but I thought it had just got a bit pudgy! Sure enough, it started hurting a week or so later and the swelling became more obvious. I know they see an awful lot of joints but when a rheumatologist starts to know what is and isn't normal for an individual that they really don't see that often, well that's amazing skill.


sixcatlawyer said:

I have certainly noticed his clinical judgment in my various appointments. He walked in at my appointment back in August, started to say hello, saw my left foot, which I had propped on the edge of the exam table and *immediately* bent down to check it. I had noticed it was a little swollen, but it always is because I have "arthritic damage" in that foot, that Achilles and that plantar fascia. Frankly, compared to the way I *had* seen it, I didn't think it was that bad, but he did and basically turned my foot every which way but loose.

He did that at another appointment last year. I had raised one of my arms and he noticed an area of swelling along my wrist, so he turned it every which way but loose and asked about it. I told him I had been banging on the computer a lot, but just like my foot, I had noticed the swelling and didn't think it was that bad compared to the way I *have* seen it. He did.

At my appointment in October, I remember him asking Paul how long I hadn't been feeling well. We both must have looked surprised because he said you're not your normal self and haven't been since I walked in. That was the appointment where I suspicion that if I hadn't told him I planned to take time off the next week, he would have written me off starting that day--he was that concerned.

The shoulder replacement was the direct result of PsA related damage. I remember the second MRI on that shoulder (done May/June 2013?) showed chronic, cystic, arthritic changes. I had them send Dr. Abbas a copy but that was after I had already begun Humira.I was having serious trouble with my feet in late 2013 so he had a set of images done. Yep, arthritis damage.

I fell this time last year and tore my right rotator cuff (massive tear), but my new shoulder guy won't do the rotator cuff surgery. He says the only thing he can do and have any chance of success is a reverse shoulder replacement because the MRI on that side shows so much arthritis and arthritis damage. X-rays of my hips show arthritic damage, to the point where when my hip guy walked in and saw the x-rays, he said ouch. The right hip is worse than the left one and must be replaced sooner rather than later. Dr. Abbas has seen all those images and said all of that damage started in the six years before I was properly diagnosed and medicated. He agrees that replacement is the answer and the reason is PsA.

I remembered last night that one of the reasons why we added Humira was because I wasn't doing as well as he had hoped on MTX alone. I would think that factor along with the continued GI issues and liver wonkiness meant I did fail on MTX. I know there is no comparison with the way I feel now on Humira every 10 days v. the way I felt shooting up MTX once a week.

I thought of you Jules as soon as I mentioned remission. I doubt that such statements are issued without some available 'evidence', however spurious.

I know some rheumys seem to have more wriggle room than others but there's some leeway in the PsARC criteria anyway with the global assessment scores. A lot must depend on how these things are used and I think that's a big argument for seeking a second opinion if necessary. I've done it, you've done it and that's made a massive difference to both of us but I can still see why people find changing doctors daunting.


Jules G said:

As you know, Sybil, I heard the same 'remission' garbage from my original rheumy team after a year on my second biologic.

This 'expert' pronouncement was made just a matter of days after a second opinion from one of the UK's leading PsA experts who found 29 tender and 7 swollen joints using the 66/68 joint count together with reduced flexion in my cervical and lumbar spine and tenderness and swelling over several entheseal insertions including both Achilles and both plantar fasci ... not to mention the crushing fatigue and severe psoriasis on my feet. Additionally great consideration was given to how this affected my day to day abilities and quality of life.

I changed rheumatologists, permanently. I have absolutely no idea what scale or if there was any scale in use in rheumy team one ... there certainly wasn't any continuity of care, five or maybe six different doctors and four or five different biologic nurses. I ended up having no confidence in their care at all so I agree 100% with you: seeing clinical judgement is all- important and seeing that in action leaves us feeling well served ...as I now do with my new rheumy.

Thank you. This job is a calling. I am very fortunate in that I love it and am good at it. I am also fortunate in that Humira is slowing down the joint damage.

He is an amazing man, that's for sure.


Sybil said:

You've certainly had it tough with joint damage. I often marvel at the fact that you don't let it stop you doing such a demanding job. I really hope that Humira is slowing down joint damage at the very least.

I've seen that eagle eye you describe. My rheumy just glanced at my knee at the last appointment and gave the verdict: 'a bit swollen'. It's my knee but I thought it had just got a bit pudgy! Sure enough, it started hurting a week or so later and the swelling became more obvious. I know they see an awful lot of joints but when a rheumatologist starts to know what is and isn't normal for an individual that they really don't see that often, well that's amazing skill.


sixcatlawyer said:

I have certainly noticed his clinical judgment in my various appointments. He walked in at my appointment back in August, started to say hello, saw my left foot, which I had propped on the edge of the exam table and *immediately* bent down to check it. I had noticed it was a little swollen, but it always is because I have "arthritic damage" in that foot, that Achilles and that plantar fascia. Frankly, compared to the way I *had* seen it, I didn't think it was that bad, but he did and basically turned my foot every which way but loose.

He did that at another appointment last year. I had raised one of my arms and he noticed an area of swelling along my wrist, so he turned it every which way but loose and asked about it. I told him I had been banging on the computer a lot, but just like my foot, I had noticed the swelling and didn't think it was that bad compared to the way I *have* seen it. He did.

At my appointment in October, I remember him asking Paul how long I hadn't been feeling well. We both must have looked surprised because he said you're not your normal self and haven't been since I walked in. That was the appointment where I suspicion that if I hadn't told him I planned to take time off the next week, he would have written me off starting that day--he was that concerned.

The shoulder replacement was the direct result of PsA related damage. I remember the second MRI on that shoulder (done May/June 2013?) showed chronic, cystic, arthritic changes. I had them send Dr. Abbas a copy but that was after I had already begun Humira.I was having serious trouble with my feet in late 2013 so he had a set of images done. Yep, arthritis damage.

I fell this time last year and tore my right rotator cuff (massive tear), but my new shoulder guy won't do the rotator cuff surgery. He says the only thing he can do and have any chance of success is a reverse shoulder replacement because the MRI on that side shows so much arthritis and arthritis damage. X-rays of my hips show arthritic damage, to the point where when my hip guy walked in and saw the x-rays, he said ouch. The right hip is worse than the left one and must be replaced sooner rather than later. Dr. Abbas has seen all those images and said all of that damage started in the six years before I was properly diagnosed and medicated. He agrees that replacement is the answer and the reason is PsA.

I remembered last night that one of the reasons why we added Humira was because I wasn't doing as well as he had hoped on MTX alone. I would think that factor along with the continued GI issues and liver wonkiness meant I did fail on MTX. I know there is no comparison with the way I feel now on Humira every 10 days v. the way I felt shooting up MTX once a week.

I think this is a great discussion and not nerdy at all, Sybil!!!

I never asked my rheumy what the deciding factor(s) were for me to get on a biologic. In my case, I had been diagnosed for several years so by the time I was willing to take the plunge to biologics (and skip the nsaids and dmards) there was no question about whether or not I would be eligible. I also had enough active psoriasis to qualify me. My rheumy not only could feel the swelling in/around my shoulders, wrists, hands, feet, but he could see it, too. That, and with my description of how stiff I was was all the evidence he needed. After I started Enbrel and the swelling and stiffness went down, there was an obvious visible change.

I'm not sure the guidelines for getting biologics are as strict in America as they are in the UK. All I'm hoping is that I continue to get "Enbrel Support" which pays my insurance deductible.