Diagnosis Questions

Welcome Greetings and Introductions
1

Hi everyone, I was wondering if I could get some opinions. I’m 34 and I’ve had psoriasis since I was a child. It’s never been terribly bad on my skin, but I’ve had nail pitting since I was a teenager. This past summer, my first finger swelled up and was very painful to use (cutting, opening jars, carrying things). It wasn’t huge like you see in the pics of people with dactylitis, but it was swollen. A few months later, my feet started hurting really bad. Less often, my lower back hurt on and off, and then my knees began to ache at night, but not often. Nothing was debilitating. I never felt the need to take meds. But, because of my psoriasis, my doctor referred me to a rheumatologist. After waiting 6 months to get in, she ordered x-rays of my feet, knees, lower back, and both hands. By this time, my finger wasn’t swollen, of course. My hand was clear, my knees were clear, but my SI joint, Lumbar facets, and both feet showed osteoarthritis. This kind of shocked me, as I’m not that old, I’m at a healthy weight, fairly active, and I’ve never injured those areas. They ordered an MRI with contrast to check for inflammation in my SI joint, and she told me it was clear, so I just have osteoarthritis there. She also said I probably have psoriatic arthritis in my hands and feet, so just distal psoriatic arthritis, but it’s mild and I don’t need anything other than NSAIDS. My blood work was clear for everything except one elevated inflammation marker. So, she cancelled my six month check up, told me I’ll stay in their files for up to 3 years, and to call if I feel worse.

I’ve been very fatigued, and I also had a random toe nail just fall off, which has never happened before. Plus, I had a huge outbreak of psoriasis on my shins right before my finger started swelling. It was the most psoriasis I’d ever had at once on my skin. In this last week, my finger has swelled back up and hurts.

I guess my question is, do I need to worry that the arthritis in my back will become psoriatic, or am I being paranoid? Is this really all just osteoarthritis? And if so, how did I get it there at this age? Or is this just early psoriatic arthritis, or maybe not a bad case of it? Any opinions or shared experiences would be so helpful! Thanks!!

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Hi there, Anne! (I have a daughter named Anne, who I worry will also end up with PsA eventually. :frowning: )
Anyway, I got psoriasis in my 20s and didn’t really have any “arthritis” problems until in my 30s, but never ever connected my stiff back, painful ribs, plantar fasciitis, sore neck, etc., etc. with having psoriatic arthritis. Back in the day, (I’m 63) I thought PsA only happened to about 5% of psoriasis victims, mostly men, so I never thought it would happen to me. And, I didn’t have the nail deformities and pitting until I was in my early 50s. Thinking back, my stiff lower back since my 30s and some of the other aches and pains I had that came and went (I would get tendonitis in my wrists and shoulders off and on, but I always attributed that to too much housework, and I had tons of rib pain during my pregnancies, but attributed that to pregnancy) were probably PsA! I had back therapy and massage in my 30s, 40s and early 50s before I was diagnosed. What’s important here is that I’m pretty sure now the stiffness in my lower back all those years was mild PsA which was causing damage that really didn’t phase me until I was 61, when it really TOOK ME DOWN! I also had painful neuropathy in my feet untreated for a couple years (I treated it with ice packs until I couldn’t take it anymore) and now my feet are so damaged that between my back and my feet, I have a really hard time getting around–especially when I first stand up, and long walks are not an option.
I recommend that you keep on top of this and don’t let it go too long. Even if you think the pain is mild–there could be severe damage and that is pretty much irreversible. I was slow to get treatment for my PsA because of my fear of the meds. And, like you, I kept telling myself I could handle it and it wasn’t really that bad. But, by the time it got so bad I couldn’t handle it anymore, the damage was done!!! It’s a sinister disease. I’ve been on Enbrel for 2.5 years now, and it’s been really good to me as far as I have no fatigue at all, I have no tendonitis in my wrists, shoulders or Achilles tendons like I did before, my scalp psoriasis completely cleared up as did some other psoriasis patches (however, it’s really bad on my right leg for some unknown reason :confused: ) and if my feet and left SI joint didn’t hurt right now, I could live with the stupid ringing in my ears which is my only other gripe at the moment (that I’m not sure is a PsA symptom, anyway).
I hope I didn’t bore you, but I wanted to make sure you know how important it is for you to keep on top of this and get serious treatment for it before it’s too late. You’re not being paranoid. Oh, and also, I think the osteoarthritis is secondary to PsA, but maybe someone else can explain that better than I can.

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Hey :slight_smile: welcome! I don’t understand how a reumathologist can diagnose with PsA but not treat aggressively… everywhere you read about it it says you need to handle the disease asap even if there is no active inflammation…

4

Well, I don’t know. She seemed to imply that if it was just distal, then it wasn’t as big of a deal? She was very concerned about my spine because of the arthritis seen there from the X-ray. She gave me medicine informational pamphlets and told me to read through them so I’d be prepared. And, she never flat out said, “you have distal psoriatic arthritis”. She just said, “you most likely have it, but just distally. Actually, I’m almost 100% sure you do.” But then when the MRI came back clear, she was super dismissive on the phone with me. She never checked my hands or feet for inflammation either. I don’t know what to think.

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Thanks for your reply, Grandma J. I appreciate hearing your story, and I will agree that looking back, I feel like I have a lot of aches and pains that I now worry were something more than I thought about at the time. My feet, SI joint, and finger are what pain me the most, too. I am very afraid I am telling myself it’s all fine, and the doctors are telling me it’s all fine, but something worse is going on inside. It’s very easy to tell yourself you are being paranoid and a hypochondriac though. Thanks again for sharing your story. It’s given me more to think about for sure. All the best!

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This is very true… especially when everyone loves to help you think your just being crazy whiny and lazy…

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7

IPersonally I would seek a second opinion.

This PsA is a slippery fish as some would say on here.

I’ve just had a severe bout of uveitis related to PsA and there’s no end to the damage it can wreak on your body.

I’ve not heard of distal PsA being a different type or version of it before - maybe one of our other members can confirm ?
Edited : I googled and it seems to be one of the 5 variations - however with SI joints also affected you maybe have the spondylitis type too.
I would seek some clarification around this from another rheumy particularly if yours has been short with explaining or investigating this.

Keep us posted.

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@Anne82, I’m going to second @Koala here. Get yourself a referral to another rheum ASAP. They sound awful wishy washy from what you’re saying, and leaving it untreated can be bad news, regardless of the severity it’s currently at.

Also, welcome aboard!

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Welcome aboard our PsA train, Ann82. I’m just going to second what others are saying: time for another opinion.

I need to get off this computer, but here’s what concerns me:

And, at 34, this concerns me a lot. I’m no doc, but having the rheum say that you have distal PsA, to me is like saying “you have a little bit of pregnancy in your uterus”. No kidding! And then saying you have SI, spinal and foot osteo (“osteo”=damage) … at the young age of 34, what does the rheum think caused that damage? Maybe I’m overreacting, but I’d rather end up being wrong than have YOU end up with serious foot damage like I have.

If my take on this is wrong, I hope someone sets me straight. But really, I’d say see another rheum for another opinion.

Again, Ann, a warm welcome to you. Boy, have we given you an earful! Sorry.

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10

Thank you all for your insight and the warm welcomes! I really do appreciate. I don’t disagree with any of you at all. I just feel a bit discouraged because two rheumatologists have already both given me the same answer: wait and see if it gets worse. I had two appointments scheduled at two different places after being on a waiting list for one. I ended getting up a call for where I wanted to go right after I’d been to the first one. When the first did a lot of blood work and the x-rays, but then told me to wait, I thought I’d get the second opinion and see what they thought. The second one is actually the one who ordered the MRI and was all concerned till it was clear. (Didn’t want to get into all the logistics in the first post, but now that so many thing I need a second opinion, it seemed pertinent to mention) So two different ones have told me it’s mild if I have it and what I have damage wise is osteoarthritis. Take anti-inflammations and watch it.

I guess my swollen finger maybe isn’t too big? They called it only mild dactylitis. I don’t know, but for whatever reason, they don’t think I need anything more than anti-inflammatories despite my age and the arthritis in several parts of my body. Do any of you just treat with anti-inflammatories? I don’t know if I want to or need to be on anything more. It’s just scary to think about, I suppose, but it is also scary to think about damage happening that I’m not aware of. This is frustrating and so hard to navigate through! Has anyone ever had a clear MRI but still had issues? They seemed to put so much stock in that MRI

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Ann, I always tell people to persist and seek another opinion until you are finally able to leave the doctor’s office and think “OK, I understand why the doctor is thinking along these lines, and it makes sense to me.” It simply makes no sense to me how a doctor could simultaneously say you have PsA and not think the damage in your feet, spine and SI is somehow related to.

But I’m not you. Does what they are saying make sense to you? No? Then either hash it out with the doctor you have, or go looking for another. Maybe you just need to ask a few more pointed questions.

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Anne, I understand how you are probably annoyed by the symptoms you’re having and all the advice we’re giving–trust me, I’m sure all of us have felt annoyed and wished it would just go away and our lives would be “normal”, as in PAIN and WORRY free, because this stuff does cause a lot of worry and anxiety, and nobody likes it.
But, we’re just encouraging you to not ignore your symptoms or make light of them because maybe they aren’t terribly painful or debilitating all the time. My dermatologist showed me a picture of a patient of hers who refused to take serious meds (biologics, DMARDS) for her psoriatic arthritis. Her hands were so disfigured she probably wasn’t able to use them anymore. That helped convince me to go on Enbrel–that, and the advice of the people on this forum.
You can take anti-inflammatories, but they are hard on the liver. An electric heating pad on some of the painful areas, or squishy ice packs are really good for lower back pain, or for neuropathy in your feet.
I never in my wildest dreams thought I’d be giving myself an injection every week–it still seems weird to me. I want to be healthy, but I’m not and I just try to accept this and know that there are so many things way worse. It’s still hard to accept, though, and we all understand where you’re coming from…we don’t judge.

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13

I’m not annoyed at all! I am very grateful to have found a place filled with people who have “been there, done that”, so to speak. I appreciate all the advice!! Hearing other people’s stories and encouragement is very helpful as I begin to navigate through this. Thank you to all who have responded!

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14

Well, to clarify, the symptoms are very annoying. But you guys, not at all!

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15

To my knowledge the only damage I have is osteoarthritis, though I’ve not had a lot of x-rays.

The first big number PsA did was in my knees. When I just had one enormous and painful knee it was assumed to be a rather flamboyant result of osteoarthritis. That conclusion came about because both my GP and the orthopaedic consultant were thinking in terms of possible rheumatoid arthritis which is ‘invariably symmetrical’. Is it? I think not. But anyway I had an x-ray and all it showed was a little OA behind the patella.

When the other knee swelled up too, by which time I’d become a completely knackered zombie, I was finally sent off to rheumatology. So two and a half months after the first x-ray I had my knees x-rayed again. Even after such a short time both knee joints showed quite bad OA. The time scale plus the PsA diagnosis means that the knee osteoarthritis is accepted as a direct result of PsA inflammation, it is ‘secondary OA’. OA is just one of many things that can happen in joints when PsA gets its mits on them.

I did at one point encounter a so-called rheumatologist who decided all my problems were OA. So off I went to a very down to earth and excellent rheumy who accepted the ‘secondary OA’ dx and treated my PsA aggressively.

I have OA in my feet too. Having moved house recently I now have another rheumy who I’ve only seen once. She queried ‘destructive arthritis’ on the x-ray form for the tootsies. I think that means she has noticed my feet are a right mess. Nobody on this planet can tell me that my foot issues are not primarily down to PsA, not without a fight anyway. I am hoping that when I see her again she will discuss the type of damage to my feet and its most likely cause.

So this is all about me but really it’s about you. Because you might have been caught in the OA trap whereby PsA may have caused OA but some doctors just won’t go there. And there’s another thing which is that, as I understand it, interpreting imaging is not easy and mistakes happen. I’m adding my name to the list of people who think you could do with a second opinion from the best PsA specialist you can find. Good luck Anne.

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16

Re your Medication question : in the past year - since diagnosed- I’ve been on prescription NSAIDS on and off, methotrexate - liver couldn’t tolerate, leflunomide - same liver function issue, prednisone, and rheumatologist just applied for Humira - a biological medication I’m hoping will control this disease.
I’m 48.

I’m in Australia, where the current treatment recommendations are to treat aggressively. I’ve only just qualified to get the biological medication as you have to try the others first here.

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17

The treatment structure @Koala mentions is generally the same here in the US if that’s where you are - it works on the same ladder scale, try these first, if they don’t work, then you get the stuff that should.

That’s always assuming, as in the tale @Sybil told, that you can get someone who will treat the disease as it’s meant to be treated - very aggressively.

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The other option Anne if you have psoriatic nails, nails falling off, wide out breaks etc is what we call the “Back Door Option.” You can get the “good stuff” from a dermatolgist in the US without having to do the step therapy routine or a joint count. Take pictures of every outbreak. The really cool thing about starting with a dermy is they fast track you on all of the Biologics (more frequent dosing to get blood levels high more quickly. What can take several months with a Rheumie takes less time with a Dermatologist… Also I would suggest you ask what criteria any future docs you see use for a diagnoses. If you are within the same system you will get the same results as th Docs are pretty much bound by the “prtocol” where they live. Moll and Wright probably are the simplest and the most frequently used. They also exclude the most patients. That seems to be what was used for you. The younger Rheumies and a growing number of system protocols are now using the CASPAR. In any event distal PsA is most often treated with just NSAIDs and generally DOES stay mild. But your psoriasis is being way under treated at this point. I’d try the back door.

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