I’m still not convinced I have PsA (normal bloods and imaging, no sausage digits… but I do have scalp psoriasis, joint and enthesitis pain). I also have celiac. I decided to try a functional medicine MD - hoping she can help with my pain, fatigue, and GI issues. I found a good one who happens to have a good working relationship with my rheumatologist. She ordered blood tests (24 vials!) and I just got the results of my TNF level… it’s 35, while normal is <22. I am not on any meds. My crp and sed rate are always normal. Does the high tnf alone mean anything?
Morning
Can I ask why you need it to show up in bloods and imaging? Most PsA doesn’t show up there indicatively. And as you know most biologics are trying to fix TNFa specifically too. @tntlamb wrote a fabulous analysis as to why PsA didn’t show up on most standard blood tests and it was because of the type of cells tested on most standard blood cells weren’t the right ones for seeing where PsA was hiding. Someone better than me at searching on here could find that for you. I found it fascinating at the time.
However just persisting in trying to find PsA on a blood test or any type of imaging seems to me to put energy in the wrong place. You have scalp psoriasis, joint and enthesitis pain and you’re a celiac. That says whatever is going on with you is autoimmune doesn’t it? So why not just concentrate instead on making your immune system work better and forget about needing a label. As that’s the way to starting to feel a lot better in my view.
When I started out I was very similar to you, nothing showed up anywhere much. Until a year or so in when I suddenly became RF positive and the very beginning of joint damage was showing. So I asked my consultant what that meant and the answer was nothing really other than whatever I had was inflammatory arthritis and most treatments for that worked for any type of it. So best I just got on with treating it. So I did and now I feel infinitely better on every level which is a far better place to be. And I’m now pretty certain mine is PsA. Simply due to history if nothing else.
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Hi there,
I guess if a higher than average tnf level indicates anything then your rheumy will be able to answer your question. I suspect that most blood tests are of little use in diagnosing PsA, mainly on the basis that it’s a refrain I’ve heard and seen time & time again in the literature and from rheumys.
Some rheumys do seem reluctant to diagnose PsA without raised inflammatory markers, despite the ‘fact’ and I am pretty sure it is a fact, that only a certain percentage of PsA patients have raised ESR & CRP. But obviously your rheumy is up to speed on that score. I say ‘obviously’ 'cos it looks as if you have been diagnosed with PsA … that’s right isn’t it?
Unsatisfactory as it may seem, PsA is primarily diagnosed on clinical signs and symptoms plus family history can be a factor too. I’m wondering why you are questioning the diagnosis … I mean, I question mine from time to time because a) I don’t want it and b) the treatment has helped so much that often I don’t notice it. But what do you think would be causing the joint & enthesitis pain if not PsA?
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I have only tried plaquenil and methotrexate and felt so much worse on both (stomach issues). My dr doesn’t think I need a biologic yet… and I haven’t pushed for one. I guess I’m just terrified of the side effects, which is why I’m looking for “proof” this is PsA. It’s the lack of swelling that confuses me. The only thing that swells on me is my Achilles… but mri and high level musculoskeletal ultrasound were both normal. No sign of enthesitis. I keep thinking, “maybe it’s fibromyalgia, not PsA.”
Thanks for explaining a bit more, I can see the dilemma. I think I’d rather have PsA than fibro, though I realise neither would be a lifestyle choice for anyone in their right mind. I’d be terrified of fibro because I’ve seen what it can do to peoples’ lives. And I’d be pretty damn worried about PsA too … although (and you probably know what I’m going to say) I worry more about the effects of the disease on my body than about the meds.
I reckon this is something you’re going to have to thrash out with rheumatology. There are no blood tests that will discriminate between fibro and PsA. Rather than go looking in the long grass, I’d personally want the best rheumy I could find to convince me, giving reasons, that I had one disease rather than another, based on their skill and experience.
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Ugly feet, high tnf on its own means that your tumor necrosis factor is higher than most people’s. In all my time here, as a matter of fact, I’ve never heard of anyone having their tnf tested. So I’m at a bit of a loss there.
“CASPAR” is the set of criteria most rheumatologists use to diagnose PsA. You’ll notice it says nothing about blood tests.
I know, this is all very worrying: we’ve been there. Nobody wants this damned disease, but if you do have PsA, you’re still far better off knowing that than not.
As for Biologics, they are now the gold standard treatment for PsA. We’ve just had a long discussion about fear of biologics. Have a read! As I said there, I too was scared of the biologics, but I was also scared of what was happening to me, my joints, and my quality of life. There’s plenty to be scared of when PsA comes into your life: myself, I’d prefer to be scared of something that we know for sure has a good chance of mitigating the wide-ranging potential damage of this disease.
Nothing’s easy about this, is it?
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Thanks Seenie. I’ll take a look at that post about biologics. So using the above criteria, I have 3 points… current psoriasis and negative rheumatoid factor (although it was slightly positive one time). But it says you have to have inflammatory arthritis AND at least 3 points. So that’s the big question that I always get hung up on… how do they diagnose inflammatory arthritis if its not obvious it’s inflammatory (ie no blood markers)? I know I’m probably overthinking this. 
in my case, the only evidence I’ve had of inflammation is a positive response to prednisone and this elevated tnf.
Well, most people, at some point, have swelling as well as pain, usually in multiple joints at once, and often moving somewhere else the next day, week, or month. So, as far as most Rheumy’s are concerned, swelling across multiple joints that doesn’t appear to be osteoarthritis is then by definition inflammatory arthritis.
But I’ve got to be honest - I’m a bit puzzled - you seem to have been on this merry-go-round of second guessing this diagnosis for some time, when I know for me, I knew what it was before I even got to the Rheumy - I read the clinical stuff (like CASPAR), then read the experiences here, and I just knew.
To me, it sounds like you might have a gut feeling it’s not PsA. So what is it about your symptoms that seems not to be consistent with PsA to you?
My first rheumatologist diagnosed PsA but he never seemed 100% confident in the diagnosis. So I saw a new one who specializes in PsA. At first he said yes it’s PsA, now he says it’s some type of “inflammatory pain” - maybe PsA, maybe not. So you can see why I’m confused too lol. He doesn’t think I need a biologic which is fine with me. He did order a full body bone scan, but I haven’t had it done yet. I’m hung up on the lack of swelling that most people get. I also wonder if my joint pain could be from my celiac. My enthesitis pain certainly seems like PsA, but who knows. As an aside… my dad has a mystery AI disease too… he has elevated crp, and is positive for rheumatoid factor and sjoegrens markers. They told him it may be lupus, sjoegrens or RA. I’ve decided that rheumatology is as much an art as it is a science.
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I agree with you on the art part, and I can imagine the lack of swelling would be a bit perplexing. To clarify, my swelling has only ever been minor, and was only visible to medical professionals for about the first six weeks after onset, in one knee.
I didn’t get to my rheumatologist until after 3 months, so despite me knowing I was swelling (couldn’t get my wedding or engagement rings on), he has never seen what he would categorize as swelling, he’s taken my word for it. Like you, I have other issues, and he ponders if my joint pain is instead related to my not-quite Crohn’s IBD.
If your pain is inflammatory related, there is a good chance the TNF blockers will work, as they have now discovered TNF is part of our pain system, as well as our immune system, so whilst you may not be ready to take them now, don’t cancel them out of your mind.
They may well be effective, even if you don’t have frank arthritis, and your pain is instead related to your constantly raised TNF status (which I imagine would have to raise risk of heart disease, stroke, and a range of other serious conditions). But obviously, that’s not what they are designed for, you you’d need to have an honest conversation with your doc first.
Meanwhile, I guess you just keep doing what you can. Some of us do seem to have these wired crossover disorders (my not-quite-Crohn’s fits into that category), so sometimes for those situations it is good to consider looking for a treatment that works, without necessarily having a solid diagnosis.
I do realise that sounds a bit like experimental medicine, and can make you feel like a bit of a guinea pig, but even for those with typical symptoms, they usually go through a few drugs in a trial and error method, before they find one that works.
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Thanks Jen. That’s good advice. I’ll talk to him about my tnf when I see him and have a more open discussion about the tnf blockers. If anything, I’m certainly learning a lot about my body and about AI diseases. God forbid this happens to any of my kids… but if so, I’ll hopefully be able to share what I know with them!
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I felt like that at the beginning too as what on earth are these rheumatologists talking about and what actually do they know? Not helped that for a time in my career I was a lawyer litigating ‘work related repetitive upper limb disorder’ and whenever a rheumatologist gave evidence on it, it was always far less good than the evidence from an orthopaedic surgeon, specialising in it. So I guess I sort of had dismissed the art of rheumatology altogether anyway.
But when I changed to another rheumatologist I gained more confidence in their knowledge then, an awful lot more. She could feel swelling where I couldn’t. That was a total revelation to me. And I learned an awful lot about on here, so my conversations with rheumatology then made more sense both ways. But I ‘got’ that most of the objective tests would never show or prove much that helped identify things sensibly in my view anyway, so I quit wanting them or needing them.
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Heh. Those numbers are all over the place for me: sometimes astronomic, sometimes “normal.” I have an erratic immune system, which is why I have PA, after all. The erratic numbers have never led either I or my rheumatologist to question my diagnosis. My regular doctor says, “Autoimmune diseases are crazy,” which probably says it all.
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