Feedback on Test Results

General
1

I recently had my first rheum appointment.

The follow up appointment is after 6 weeks.

I have the results from most of the testing that was done. Only the HLA-B27 is pending.

I would appreciate feedback on these results.

I will of course be discussing this at my next appointment but want to gather as much information as possible before then.

They appear to indicate that I have osteoarthritis based on the results of the inflammatory markers and the imaging report.

Blood tests
RF,ESR,CRP and anti CCP all in normal range

Imaging

X-ray lumbar spine, sacroiliac joints, hands.

Indication:? Sacroiliitis.? Inflammatory arthritis.

Findings:
Lumbosacral spine:
There is mild degenerative disc disease involving the lower two lumbar intervertebral levels. Vertebral body heights are maintained. No syndesmophyte formation.

Sacroiliac joints demonstrate evidence of osteoarthritis.

Hands:
Osteopenia of the bones are demonstrated. There is mild osteoarthritic change involving the STT joints and the thumb carpometacarpal joint. No erosive changes are demonstrated.

Impression:
No radiographic features of an erosive arthropathy.

2

Sounds a lot like me. Pretty normal bloodwork, although I tend to be mildly anemic as well. Donā€™t let the doctor tell you that your bloodwork is normal so that means that you donā€™t have inflammatory arthritis. You can have normal bloodwork and still have inflammatory arthritis.

Thatā€™s a good follow up period, to discuss the test results as well as treatment options. Youā€™re still awaiting a diagnosis? The treatment should be the same start, regardless of whether you have a firm diagnosis of PsA or some unknown inflammatory arthritis. If they think itā€™s inflammatory, then you should be treated.

3

The rest of my bloodwork was also good- no anemia or any other issues.

I guess my point here is that there are so far no indicators of inflammatory arthritis based on these results

If we set aside the inflammatory markers in the blood work - which I understand can be normal even in the presence of inflammation- the imaging appears to be indicating that the issue is OA and not RA or PsA.

Iā€™m interested to get feedback from others who are further along this road than me and are more familiar with these tests and what they indicate based on experience.

4

Hi there @ktel, firstly Iā€™d like to make it clear that Iā€™m not a doctor of any sort, and am also fairly new to the PsA thing. In saying that there are a couple of bits of info Iā€™ve picked up from reading heaps that might, or might not, be useful.

As many as 50% of us have blood tests within ā€œnormalā€ range (Iā€™m one of those) so donā€™t be too surprised by those results.

X-ray imagining often doesnā€™t show erosions until they are well advanced (something it would be great to avoid if possible). Nor do x-rays give much of a picture of any soft tissue (tendons etc) involvement.

And (someone might like to correct me here) it would seem that a lot of us are diagnosed with osteoarthritis in the ā€œearlyā€ stages of PsA. My understanding of this is that osteoarthritis can be secondary to PsA (not too sure on that one though, someone with more knowledge might chirp in on that one).

Before your follow up rheumy appt. do make a list of all and any issues you have that might be associated with inflammatory arthritis, and do note the limitations those things put on your ability to do everyday things (keep these notes short and concise so rheumy can get an overview with quick glance)ā€¦ include things like fatigue, brain fog, tendon/ligament issues, rashes, etc etcā€¦ give this list to your rheumy, do NOT leave anything off that list, there might be something on there that points your rheumy to an inflammatory arthritis, even if it isnā€™t showing in test results at this stage.

Itā€™s not easy dealing with something that doesnā€™t show any of the initial tests. It wasnā€™t until last month that my rheumy became convinced that I do have some sort of inflammatory arthritis, when he found some tenosynovitis in one of my handsā€¦ he commented along the lines of ā€œthat is ONLY found in inflammatory arthritis, usually RAā€ā€¦ as weird as it will sound, that was the first time I really felt vindicated in pushing to get things looked at, and not just accepting an ā€œosteoarthritisā€ or ā€œjust old ageā€ diagnosis :blush:

All the best with your follow up appt. Please do let us know how you get on with it!! Hugs!!

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5

They took a fairly comprehensive medical history in the appointment along with all of my symptoms.

What would typically be the next step in confirming a diagnosis- whether that be OA or PsA?

Thus far there has been a physical exam, blood tests and xrays. These are all pointing towards OA.

Is it appropriate to still consider inflammatory arthritis at this point?

Iā€™m just trying to get a clear idea of the next steps in the diagnostic process .

6

I think most of us have OA. Itā€™s secondary to our PsAā€¦I donā€™t know what it takes for some doctors to diagnose PsA more quickly and others to wait and see, and then wait some moreā€¦

I remember I was diagnosed after having psoriasis for 30+ years and my fingernails were pitting, turning yellow and some of them coming loose. Not really that bad. My fingers felt weird, thoughā€“I described it as ā€œfizzyā€. They were swollen a bit, along with my hands, but not extremely bad.

My internist sent me to a rheumy upon noticing this and I was diagnosed! Simple as that! The rheumy didnā€™t really suggest doing muchā€“maybe some NSAIDs, etc., but she really didnā€™t make a big deal of it.

Somewhere along the line she retired and I got a new rheumy. That was after a few years and my symptoms were increasing and getting more problematic. Everything that most of us have experienced. He started trying to convince me to take some meds. I did do prednisone a couple times and that was amazingā€“made me feel like I was walking on air. And, cleared my brain so well I felt like my IQ jumped at least 40 points!!! But it took several years before I got to the point where I felt I needed a biologic.

Since weā€™re all experiencing a lot of the same symptoms, I can not figure out for the life of me why some doctors are so slow at making the PsA diagnosis!!! I feel I was really lucky. I think my first rheumy might have had PsA or RA herself, though, so that could have helped her know what was going on with me. It just doesnā€™t seem fair that some of the rheumies are so hesitant to make the diagnosis when people are suffering sooooooooooooooo much!!!

7

Iā€™ve just had a quick look through some of your other posts and see your rheumy is at the Toronto PsA specialty clinicā€¦ and that you are already on Mtxā€¦ am I correct there?

If so, you have the best rheumies at your disposal, and I am sure they will not just brush you off with osteoarthritis diagnosis. I doubt if they would have given you Mtx without feeling confident of an inflammatory arthritis, they must have found what they believed was sufficient evidence during the physical examination they performed at your first visit. The testing would have probably been more about either ruling out some other autoimmune conditions, or looking for additional evidence to solidify the PsA diagnosis (well, thatā€™s how it would appear to me anyway).

Iā€™d only be guessing to suspect your next appointment with the clinic will be to see how you are going on the Mtx, and possibly either increase your dose (Iā€™m not sure what dose you are on at the moment) or add another DMARD (like maybe sulfasalazine or leflunomide) to your meds.

I think most places seem to require either a failure of 2 DMARDS or extremely rapid progression of the PsA (indicated by x-ray evidence of erosion), before funding for a biologic is granted.

Oh, and often x-rays are taken at your first rheumy appt. as a baseline so that progression of erosion can be tracked in relation to those first x-rays.

At this stage I have seen 4 different rheumys (my ā€œrealā€ rheumy was out of town for the first couple of appts so I saw locums, and now my ā€œmainā€ rheumy is my ā€œrealā€ rheumyā€™s registrar lol), PsA is still only a tentative, maybe diagnosis for me but I am currently taking Mtx, Leflunomide and Tilcotil by way of treatmentā€¦ Iā€™m not sure where things will go at my next rheumy appt. maybe an increase in the Leflunomide or addition of prednisone or a biologic (I think that might be where things are heading, but unfortunately need to go through the ā€œprotocolā€ to get there).

Oh, and to add to my ā€œnormalā€ blood tests, the only x-ray signs they have found to date is heel spurs and mild osteoarthritis in hips and knees.

I completely understand your wanting a clear idea of the next steps in the process, however, every rheumy will do things differently, and every patient they see will need a different approach too.

Unfortunately we are both in the early stages of diagnosis and treatment, this seems to be pretty much par for the courseā€¦ it may take some time to get definitive answersā€¦ itā€™s taken me quite some time to not let the frustration of that get to me, and some days Iā€™m still not good at that :laughing: As you are dealing with expert PsA rheumies I would expect you may not have to wait quite sooo long for definitive answers. Keeping my fingers crossed for you on that score!!

8

I saw a rheum at Womenā€™s College Hospital in Toronto.

The hospital does have a PsA clinic but my appointment was in the ā€œgeneralā€ rheumatology department not the PsA clinic.

This was my first appointment, I donā€™t have any diagnosis yet and am not taking any meds other than NSAIDs .

I also donā€™t have a diagnosis of psoriasis.

My symptoms started a year ago .

It started with SI joint pain and then later in my hands - DIP joints, thumb,wrist.

I also have issues with my left knee , this is a long standing issue.

My primary pain is the SI joint- the swelling and stiffness in my fingers and wrists isnā€™t too bad and has improved over the last couple of months.

Basically Iā€™m just trying to get a sense of the next steps in the diagnostic process.

If nothing at this stage points towards it being PsA is it appropriate to run other tests just to be sure and if so which tests?

9

Hi ktel.

There arenā€™t any diagnostic tests for PsA. If you or your rheumy suspect PsA, might it be possible to get an appointment in the PsA clinic?

10

Oh gosh @ktelā€¦ I am sooo terribly sorry for my error, reading through some of your old postsā€¦ I know where I made my mistake, I read seenieā€™s reply on one of your threads and thought it was your commentā€¦ wowā€¦ that really was a bad brain fog day :roll_eyes: :blush:

OK, so, your next appt. your rheumy will want to know how you got on with your NSAIDSā€¦ and go from thereā€¦ it may mean trialing a different NSAIDS or looking at starting you on something like Mtx if the rheumy still suspects PsAā€¦ do let them know if there has been ANY improvement in symptoms or pain while taking the NSAIDS.

For me it was a GP who started me on the NSAIDSā€¦ I trialed Naproxen with no improvement, so then it was a trial of Tilcoltil (which did give a little noticeable improvement), it was when I asked him about something more aggressive that my GP started me off on a very small dose of Mtx (at that stage I wasnā€™t able to get an appointment with a rheumy, they are few and far between in these parts).

As @Sybil says there are no specific tests for PsA, often the tests are done to rule out other thingsā€¦ Iā€™m pretty sure it was having a good response to a round of Prednisone that confirmed to my GP that we were likely dealing with PsA and gave him the confidence to start me on a trial of Mtx. Each case will be different though.

The ā€œwait and seeā€ game we need to play with this as we trial each med is frustrating to say the least, but necessary to determine what (if any) response there is to each med.

See how things go with your follow up rheumy appt. As it is still early days for you, and there were no notable erosions on your x-rays they may decide to take a conservative approach to see where things develop.

Keeping fingers crossed for you!!

11

Hi Ktel,

I canā€™t tell you what the tests indicate, but I can tell you mine were very similar results, almost word for word, except I had a couple of extra findings including joint space narraowing. Occasionally I had a slightly elevated WBC (that both the GP and Rheumy said could have been from anything).

You have said that they have taken a thorough history etc and everything appears to be pointing to OA - are you starting to feel itā€™s likely OA too?

Can you remind us if the history involves some of the extra-articular issues (I seem to remember nail pitting, but not sure if you have the fatigue, extra morning stiffness -which by the way some of us get at night too, dry or irritated eye, flare ups of swelling and stiffness without use / overuse, or any other apparent changes in immune system - like a sudden onset of allergies or non-psoriasis rashes)?

Certainly my Rheumy suggested most of my X-ray results were the consequences of OA (though it seemed at little unlikely to me age 35), so it was the extra-articular stuff that gave us the clues.

Then he gave me prednisone, and all of it, extra articulate stuff included, appeared to miraculously disappear. That in and of itself is a type of test, though OA can have a very inflammatory course as well, so if joints are the only major issue, prednisone might make that feel pretty good too.

How are you feeling about the process?

12

I honestly have no idea if it is OA or PsA.

I think based on the axial involvement that itā€™s unlikely to be RA (especially with the negative RF) so I guess weā€™re probably looking at OA , PsA or perhaps both

Iā€™m just doing my research and preparing for my follow up appointment.

The rheum hasnā€™t discussed any suspicions with me yet- basically they did a physical exam, took details of my medical history and symptoms and sent me for tests.

I was given 2 prescriptions for NSAIDs to try in the 6 weeks before my next appoitment

I was told that it usually takes 2 weeks to see if an NSAID will have any effect.

I have taken Meloxicam for 2 weeks and havenā€™t really noticed any benefit so Iā€™m going to try Naproxen next.
When Iā€™m assessing benefit this relates primarily to the SI joint. Recently I have also noticed some discomfort in the right joint which is new.

My symptoms started in January 2017 with swollen fingers and wrists and the SI pain started in February.

It was when I started to experience stiffness in my DIP joints, wrists and tendons that I decided to look into the underlying cause.

I donā€™t have any nail pitting and donā€™t have a diagnosis of psoriasis.

I do have recurrent bouts of dry skin on my arms and elbows .

I have had dry eyes for the past 7 years.

I havenā€™t experienced any fatigue or the brain fog Iā€™ve heard mentioned.

The swelling in my fingers has actually decreased over the last month or so , itā€™s the SI joint that causes the most problems.

The SI pain is worst after periods of inactivity also when standing in one place for a while and also exacerbated by certain activities- carrying weights, vacuuming etc.

The severity of discomfort does fluctuate. There are periods where it is just a mild ache but I did have a flare of all of the joints in August that lasted around 4 weeks.

Right now the pain is bearable but I am using salonpas patches on most days.

I suspect that I may have OA in my left knee. I have had long standing issues with that dating back to 2007. Iā€™ve had PT in the past and the joint clicks a lot.

They didnā€™t x ray my knee but I will request they do in my next appointment.

I realize that it takes time to diagnose , Iā€™m just trying to be as informed as possible. Iā€™ve learned to be a strong advocate in my healthcare.

Iā€™m not overly concerned at this point and as you say I am at an early stage and a conservative approach can be followed.

I can handle the symptoms (at least at this stage) with certain exercises and pain relief methods .

My main concern however is making sure that I get an accurate diagnosis and appropriate treatment to prevent further deterioration/damage.

Thanks for the information on the prednisone as being a possible aid in the diagnostic process.

13

It certainly sounds like a tricky one. The lack of extra-articular manifestations, with the exception of dry eye makes it hard to see a clear direction, so I can see why they are taking a conservative approach and starting with NSAIDS.

The prednisone trick may not be used too much in the US - mine is an old school Rheumy and in Australia we seem to still use prednisone a lot more than many places. If you have an inflammatory dominant OA (which given your sudden onset and dominance in the joints of the hands is the likely alternative - and apparently different to classical erosive OA), then it may work for the joints in that too, particularly if there is not a lot of physical damage as of yet.

If you have a family member with psoriasis, PsA is an option. If not, then it is generally ruled out by the diagnostic criteria. Even then, an undifferentiated seronegative spondylarthropy is still a possibility (as is RA - though it is not the majority, there is still a significant proportion of both seropositive and seronegative RA who get axial involvement).

At this stage, I understand how frustrating it must be, as it really does sound very equivocal - you seem to have very little extra-articular issues (fatigue and brain fog, whilst often dismissed by Rheumys as inconsequential, are particularly classic symptoms of an autoimmue arthritis, and tendon problems of PsA), but then, inflammatory OA, on a very brief search, doesnā€™t often seem to show up in the wrists (or SI joint)?

It does seem that in very difficult to diagnose cases, sometimes the techniques go further - eg aspiration of the fluid in the joint - though I donā€™t have any experience, either with the process, or how accurate it is.

I donā€™t know much about inflammatory OA, though from what Iā€™ve read the main differences between inflammatory OA and PsA or classical RA seem to be that inflammatory OA rarely involves the wrist or joints outside the hand, and it is usually self-limiting.

In terms of getting an accurate diagnosis, you are doing all the right things getting as much information as possible prior to your next appointment. If you also have as much information on inflammatory OA, that will help you to point out the things that both are, and arenā€™t consistent between the options, and I think that is probably the best you can do at this stage.

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14

My blood work is always normal, too. Like you I have OA also. The way I can differentiate the pain between the two diseases, OA is a dull pain, PsA, gives me a sharper pain, it also moves around, so one day it is the ring finger, last night the pinky, etc. Even though my spinal pain has been Dxā€™d as DISH, my spinal pain is lessened by biologic drugs.
Hope that helps.

15

In the course of my research I came across this article which shows the real difficulty for rheumatologists in distinguishing between cases of PsA and OA .

16

I havenā€™t read it all yet.

I managed to get a PsA diagnosis 6 years ago, though it was a close run thing. By that time my PsA symptoms had become very pronounced whereas discernible OA remained minimal. Before then, a smattering of OA, small thyroid fluctuations, having one leg very slightly longer than the other, the weather or whatever got the blame.

Since diagnosis Iā€™ve received very effective treatment in the form of Humira. So these days itā€™s a relatively minor irritation that this still applies to me, (from the article you post): ā€˜a failure to appreciate that the pathological process overlaps in the two diseasesā€™.

However, I think really good rheumys can tell the difference between PsA and OA. Itā€™s in your interest, obviously, to get a correct diagnosis whatever that may be.

Given the amount of time it has taken many folks here to get a PsA diagnosis and the damage quite a few have sustained as a result, you could urge your rheumy to keep watching out for further signs of inflammatory arthritis if ā€¦ and it is an if, you end up with a dx of OA. Any rheumy worth their salt should understand your concerns.

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17

I just wanted to write an update to this and would appreciate some feedback.

After I last posted in January I had an appointment with the Rheum in February to discuss these results.

It wasnā€™t the greatest appointment and sheā€™s not the best communicator.
I basically came away with a general sense that she thought the issue to be mechanical and not inflammatory.

At that stage she didnā€™t have the results of the HLA B27 test.

She recommended that I continue with the NSAIDs and see a PT and see her after 3 months.

I had an assessment with the PT and was given an exercise plan which I have been following for the past 6 weeks.

I think that regardless of the final diagnosis that being active and following this plan will be beneficial combined with medication/pain relief.

So , fast forward another 3 months to my appointment today.

She finally had the results of the HLA B27 test and itā€™s positive.

The plan now if to have an MRI which she said will confirm whether or not I have AS.

She said that if inflammation is present on the MRI that this would be indicative and if not then it can be ruled out.

So now Iā€™m going back to my research to better understand the significance of this result.

From what I understand this relates to one of the SPAs so itā€™s a question of determining which one .

Diagnostically what would be the plan to determine if itā€™s AS or PsA , or something else?

I did remind her that my brother has psoriasis , which she made a note of - although itā€™s already in my medical history on file.

Also regarding medication. The Rheum said that biologics donā€™t work in preventing disease progression with axial arthritis.

She said that benefit was an improved anti inflammatory effect only- i.e. the next best step from NSAIDs as non biologic DMARDS are ineffective in axial. Is this the case?

Before todayā€™s appointment in my mind I had pretty much accepted that this was probably a mechanical issue that I would address with PT and NSAIDs and was really surprised to learn of the HLA B27 result.

18

Hello ktel.

As I understand it, HLA B27 is fairly common amongst the general population and is not much use in diagnosing PsA. However I have heard that it is considered relevant when AS is a possibility, it must be found more frequently still in folks with AS I suppose.

As for this:

My understanding is that non-biologic DMARDs tend to be more useful for peripheral joints, as your rheumy says. But I thought the biologics were actually the gold standard for AS and considered to be particularly effective for axial symptoms generally, whether due to AS or another SpA.

Iā€™m in the UK where thereā€™s a fairly rigid treatment protocol for inflammatory arthritis and, indeed, the one for AS starts with NSAIDs but misses out the non-biologic DMARDs, proceeding instead to biologics if necessary.

Apart from that question mark in my mind re. biologics & AS, it sounds as if things are moving forward for you. PT and exercise are most definitely the way to go, vital with inflammatory arthritis and probably just as important with OA.

I hope the MRI clarifies things. Iā€™ve lost the plot with imaging, the question of whether or not it helps diagnostically has got way too complex for my little brain. Does an MRI even show inflammation? I just donā€™t know.

Keep a look out for anything that even vaguely resembles psoriasis, even the tiniest patch can be significant diagnostically. And watch out for any swelling too.

19

Hi Ktel,
I was diagnosed last fall with both peripheral and axial psoriatic arthritis. I have erosive damage to my right sacroilliac joint with sacroillitis and erosions in both feet. I had a history of inverse psoriasis that had not been active for over 10 years. My rheumy put me on Enbrel immediately after reviewing my x-rays. She said the non-biologic DMARDS help the peripheral issues but not the spine. According to her, biologics are considered the gold standard for axial treatment. It took me years of pain and suffering before being diagnosed. It wasnā€™t until the damage was bad enough to show on my x-rays that they figured out what was going on. I have read that an MRI can show early inflammatory spinal problems long before they would show on a regular x-ray. I realize that PSA is hard to diagnose but it is sad that some of us have to occur damage in our joints before being treated with the proper medications. I am sorry you are dealing with this and hope you can get some answers soon.

20

Hi Cabezio,

The x rays didnā€™t show any damage to the SI joints but showed osteoarthritis.

The MRI would be to see if thereā€™s any evidence of inflammation .

This next step is being done based on the positive HLA B27 result.

I suppose at this stage itā€™s a question of narrowing down which kind of SPA it is.

The possibilities from what Iā€™ve been reading would be non radiographic axial SPA, AS , PsA or undifferentiated.

Iā€™m in the process of reading up on this so there are still gaps in my knowledge right now.

For sure the traditional DMARDs are known to be ineffective for axial.

I was more curious about the Rheumā€™s comment that the Anti- TNFs show no evidence of actually preventing the progression of the disease

I guess then itā€™s really a question of them having the best anti inflammatory mechanism which would then in turn reduce the extent of the damage.

Although it would be great just to move to biologics from NSAIDs unfortunately I think a trial of a couple of traditional DMARDS is required first to have any chance of getting drug coverage.

Iā€™m jumping ahead there though as nothing has been officially diagnosed as yet.

Although I did suspect that I may have a mild case of psoriasis that hasnā€™t been diagnosed.
The problem is that every once in a while I get dry patches of skin on my upper arms that doesnā€™t last long. Getting a diagnosis would be a challenge.

I did have stiffness,joint issues and swelling in my hands and wrists a while ago which has since pretty much abated . This may or may not be connected.

Itā€™s a question of trying to piece all of this together right now as you know.

As you said regardless of what it turns out to be and what medications are needed the PT will be of paramount importance.

Itā€™s key that I maintain good flexibility in my spine.

I have been doing some back extension exercises daily for the past few weeks. They were pretty difficult at first but are getting easier .