Newly diagnosed - maybe?

After years of pain in my hands and increasing deformity and being told nothing could be done because it was osteoarthritis, a new rheumatologist suggested I have PsA (pencil and cup on xrays, swan neck deformity). I had sought a new rheumatologist because my dermatologist freaked when she saw my hands. She said that the swan neck deformity, bent fingers at the ends, nodules in my lower fingers, and swelling in the middle joints all looked like PsA. My previous rheumatologist many years ago had said that my deformity looked like PsA but because I don’t have psoriasis anywhere on my body, he said I most likely had osteo - even though my mother died from complications of lupus and psoriasis runs in the family (so strong family history of auto-immune disease). My hands are so deformed that I try to hide them. I’ve played the cello for over 40 years and can’t anymore because my fingers are so bent. They don’t hurt as much as they used to, probably because the joints are fused and because for several years I’ve avoided sugar and other inflammatory foods. Anyway, my new doc started on MTX (on 20 mg now) and Leukovorin. So far no noticeable difference in my hands. But I have noticed I’m more tired - especially the day after I take the MTX dose (bone tired). My doc says she’s 95% sure I have PsA but can’t say 100% since there’s no definitive blood test. Anyone else have a less than resounding diagnosis? Anyone tried splints?

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Goodjaz, I would say that MOST of us here had less than resounding diagnoses. I think you can safely drop the “maybe?”. And with that reassurance, welcome to our PsA clubhouse! There’s lots for you to read, and we are a pretty friendly, chatty bunch. Ask questions! Start a conversation! Or if you’re just quietly thinking, use our search feature to look for answers (or more questions, LOL). It’s the magnifying glass icon in the green band, towards the right.

It’s interesting to hear that it was your derm who immediately saw the PsA. I remember hearing that derms are often better at picking up PsA than Rheumies. Sadly, some rheumatologists are amazingly resistant to diagnosing our disease, to our detriment. Whatever, I’m glad that you’ve got a new rheumatologist.

We’re glad that you found us, but it’s too bad that PsA found you.

S

Your story sounds a lot like my mom’s. She was finally diagnosed with PsA after pointing out that I had it and knowing that there is a strong family pattern. Voila! Her x-rays were reviewed again and she was diagnosed with it and started on treatment.

Hi Goofjaz and welcome! I’d say with pencil in cup and swan neck deformity you’d have more definite signs tha a significant portion of us (and that includes me!). PsA is not always a straightforward one to diagnose.

The good thing is that now you know, and you have started treatment. The MTX is important, but only the first in a long line of treatments, and most people find one (or more) that really helps, so you are on the right track :grinning:

Thank you for the warm welcome. I very much appreciate it. I wonder how one knows if the treatment is working. I guess if the hand deformity doesn’t worsen? Or if the pain in the morning is less? Is there any chance that my hands could become less misshapen? Or has that boat sailed? :slight_smile:

The damage is pretty much done to my mom’s hands. A lot of joints have autofused, and she had a few more fused surgically a few years ago. So how does she know that treatment is working? Well, certainly not by a change in her bloodwork, as she is sero-negative, just like I am.

What she has noticed is that she has less morning stiffness. She has also noticed that much of what she had assigned to aging has in fact improved greatly. Your doctor should also be laying hands on many joints at each appointment to feel for inflammation that you may not be seeing.

That’s one of my questions too. I was hoping that it would be that I feel alot more capacitated.

That is indeed an interesting question.

Things were relatively simple for me because I started off low as low can be but also without too much joint damage. I started on steroids plus mtx and off we went on a weekend break in the spirit of insane optimism that comes when you’ve never really been ill before and think the drugs will work miracles. You know those bridges they have over roads in towns? There was one in Liverpool (where we went). I managed to cross it in one go with the help of my stick and my husband, it took some time. Then I stayed awake for the time it took to eat a pizza. Both achievements were mega at the time.

However … after the 6 week steroid taper I continued to improve. Boy, was it slow. But the Mtx seemed to pick up where the steroids left off.

How on earth you gauge improvement if you do not have such crushing fatigue or are not currently experiencing such an all-encompassing flare is difficult to say. But some of the limitations that I’d attributed to knee joint damage did shift, I didn’t anticipate being able to walk pretty normally, as I do now. There again (it’s never simple!), it was Humira that finally got my knees working especially well again. Also, stiffness went from 24/7 to ‘just’ morning stiffness whilst on DMARDs.

To clarify, the timescale for noticeable improvement in mobility and energy was a year maybe, on DMARDs alone. And a lot of that was lightbulb moments, looking back and comparing where I was with where I had been even though I was still far from where I’d want to be! Then Humira added something I’d almost call zest for life … lol. Yeah … on some days!

I think that as Stoney says, over time you may notice that some things you’ve attributed to damage or to ageing may improve. If damaged joints are stiffened even more by inflammation then the hope is that they will be a little less painful and possibly a little more mobile too as the drugs do their work incrementally.

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Hi Goodjaz,
It took me many Rhuemy appt to get diagnosed. It seems that most of us have gone through this ordeal. After years of seeing my Rhuemy, whenever I meet a new nurse, they ask about psoriasis on my skin. Just their tone of voice makes me think they don’t believe that I really have PsA. But that may be projection on my part. This disease is hard to diagnose. I have pics of my finger nails before treatment. I actually showed one nurse the pics to show her how much Stelara has helped. So sorry to hear about your hands. Stopping further damage is an important goal for using the medicines.

Something that my specialist rheumatologist (the researcher et al) does is has me complete a health assessment questionnaire each time I go. Lots of questions, all graded on a continuum. Apparently the scores, over time, do show trends in how you are doing.

Hi there Goodjaz, and welcome!!
I am new to the forum and have a “maybe” type diagnosis too. For me I have found that since being on methotrexate my fatigue levels have reduced… my nana naps are much shorter and often, late in the day, I realise that “I haven’t had a nap today”… this has been surprising as I have needed a 3-4 hour sleep in the afternoon for several years… so, for me, I gauge the improvement as a reduction in fatigue (even if pain levels seem to be mostly static).

You didn’t mention how long you have been on methotrexate… it can take a few weeks to start to show any benefits, for me it was about 6 months (on a low dose) and even improvement in fatigue was minimal, but soon after increasing the dose a little (on docs advice) I noticed that little bit more energy.

As for feeling more tired the day after taking it, I can remember feeling the same way, but this eased off after a couple of months and I think making sure I drank more water the day I took it helped a little too. Also I found I needed to increase the folic to 6 days a week too, so you might find it helpful to chat to your doctor about that.

I am soo very sorry to hear that you can no longer play your play your cello, it is particularly difficult when you need to give up something you love.

All the best with treatment!!! Don’t be afraid to let your doctor know if you are/are not noticing improvement. It seems it can take time to find the right treatment/dose for each of us and although this can be frustrating it can also mean there is always hope for better.

Hi there and welcome! I can understand the “maybe” feeling about a PsA diagnosis. I don’t have obvious psoriasis, and even the occasional patches that I “think” look like psoriasis never seem to occur when I already have a Dermatology appointment scheduled for my Rosacea. :slight_smile: So I’ve never had medical confirmation that a rash WAS psoriasis, and my Dermatologist completely blew off the idea.

Thankfully, my rheumatologist is one of those open-minded ones that stresses psoriasis isn’t a necessity at the time of PsA diagnosis, and I DO have a lot of strange rashes. :slight_smile: I’ve had my share of dermatology issues and know when I’m having a contact dermatitis flare (due to 3 contact allergies) and a Rosacea flare (as I’ve dealt with that for 15 yrs), so my Rheumy thinks the scaly patches probably ARE psoriasis. It also helped that I have a wonderful Orthopedist the past 7 yrs who kept working to find me a rhuematologist who didn’t just rely on blood-work and fell back on an easy Osteoarthritis diagnosis.

Mostly, my symptoms don’t fit any of the other autoimmune diseases, which is very common with PsA. This was after my Orthopedist had questioned my strange knee problems for a few yrs. No matter what we did, my “bad” knee worsened every 2 yrs, and almost seemingly overnight. The joint destruction was fast and furious, with chronic inflammation. We dealt with it through NSAIDs and surgeries until last November.

Thankfully, (I know, right???) in November (2016) my right wrist and left foot swelled for no reason. My rheumy said that was the confirmation she needed to make a firm PsA diagnosis and start me on a DMARD. I finally felt validated, though I still have strange moments of doubt (ha)!!. The medication DID help though, which was further confirmation. She keeps telling me the obvious psoriasis is likely coming in the future, so don’t be surprised when it happens. I’m 45 and have had the joint problems since I was 25, so at this point, nothing surprises me. :slight_smile:

Anyway, welcome and join in the conversation. Everyone here is very supportive and knowledgeable.

–Lisa

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Hi Lisa, I’m a bit puzzled by your dermatologist. Psoriasis (in the spot it erupts) permanently alters the skin structure - so even when it looks healed, a punch biopsy will confirm or otherwise.

It probably doesn’t matter as your Rheumy has given you a diagnosis and you are getting DMARDs. But should it ever present a treatment hurdle in future, just keep in the back of your mind where the psoriasis was, and that it can be tested :grinning:

Thanks, Jen75. I knew a biopsy would confirm it, but I haven’t had any skin eruptions since my diagnosis and starting on Plaquenil 8 months ago. I WAS told by both the rheumatologist and dermatologist to come in for a biopsy anytime I get a spot that is suspicious, so I’m patiently waiting–LOL.

Thankfully, my Rheumatologist doesn’t really care if I have ANY skin manifestations though. She reminded me how common this is with PsA. I’m glad she’s so open-minded, but that still makes it hard to explain to others. If one more person gives me that odd look and says “But you don’t have psoriais…”. :frowning: My dermatologist has been great with my Rosacea/acne issues the last 10 yrs, but that entire office sees psoriasis as an obvious thing. It was very awkward both times I brought up the PsA diagnosis, and each Derm wasn’t very supportive. It’s a crazy, busy office though, so maybe I misread them and their hurried-as-usual expression those days. The 2nd (saw him when the other was on vacation) completely blew me off and said “You would KNOW if you had psoriasis.”

I’ve been in a weird head space since around the time of my diagnosis anyway, and only a few people even know I received an ACTUAL diagnosis. I guess I didn’t want another person questioning me and my “label,” especially if a Dermatologist thinks it’s questionable. I know my Rheumatologist is the only opinion I need to care about though, and maybe one day, I WILL get obvious psoriasis. With this disease, time always tells, right?!

Thanks again. :slight_smile:

–Lisa