Listen up. Take notes

This is the story of my feet. My sad, sore feet. The ones that are hard to walk on. Not my two knee replacements, nor my hip replacement nor the hip that is on its last legs. Not the aches, pains and fatigue that my doctor blew off for ten years. No, this story stars my feet.

I complained of sore feet for about five years. It was “get orthotics”. A couple of years later, my feet were still sore. A sports meds doc said it was metatarsalgia. Get new orthotics. The pain continued and got worse. X-rays showed nothing. Then I couldn’t stand it any more, and when the doc said “maybe get some new orthotics”, I bolted to a podiatrist. She took an x-ray and found erosions, which led to my being diagnosed with Psoriatic Arthritis.

The rheumatologist took the view that my case was mild and she dispensed the usual DMARDs in succession at three-month intervals. They did very little, although Arava did help minimally. The whole time, I was absolutely terrified of further foot damage, but I felt that I had to trust her. I was, after all, not qualified to practise rheumatology, and she was. At the end of the year of experimentation, I asked for a biologic. She refused, saying my disease didn’t warrant that. I wept. Some months later, my Orthopedic surgeon, having looked at my hip x-rays and strongly suspecting inflammatory damage, wrote her to ask that she reconsider my treatment. No action. At that point I sought a second opinion at a specialty PsA clinic. Their assessment? Severe disease, considerable damage. Their prescription? A biologic, asap. At least at that point, my feet had not got appreciably worse than they had been the year before.

Six months after starting the biologic, I had more x-rays. These, though, showed significant deterioration of my feet from six months before. I suppose it must have happened during the time that the biologic was not yet having its full effect on me. I ended up seeing the best foot and ankle surgeon in the region. I fully expected that it was going to take sharp instruments and a lot of sutures and plaster to get me walking normally again. The surgeon did confirm that my feet were badly damaged by PsA. I already knew that. But I had not expected that they would be so badly damaged that no surgery could be done. I am left with pain killers and keeping my fingers crossed that the PsA-damaged bones will fuse themselves into a pain-free lump. My inability to walk properly is permanent. Forever. To say that I was upset would be an understatement.

Early and aggressive treatment gives the best outcome. Those are the words of Gladman and Chandran, and the watchwords here. When would “early” have been for me? I think early would have been when my feet started to hurt, about five years before I knew I had PsA. By the time I saw the rheumie, and already had erosions, it was already L.A.T.E. In retrospect, she should have cut to the biologic chase asap. Instead, we waited. We tried this and that. She misjudged my disease, despite the existing damage. She miscalculated. And it was my feet that were lost.

Treatment. Early. Aggressive. Take notes.

1 Like

Upset is, I'm sure, way beyond an understatement. I appreciate that you are willing to hold yourself up as an example of what the disease can do, and why early and aggressive treatment is critical.

I am so sorry Seenie. I wish we could go back and do it over. I guess I will have to settle for saying a prayer that they will fuse quickly and cause you less pain. I am here for you, friend. <3

Oh Seenie, that’s crap!

I been thinking of you since Tuesday and guessed the news wasn’t good, but didn’t expect that news…Im so sorry. You need time to grieve for your poor sorry feet. This is the time you really wish you could grab a doc and force them to acknowledge what their “its mild disease” has done to you.
Sending a hug x

Hi Seenie,
I am always amazed, feel terrible for you, and feel fear for myself when I read your stories.

If I tell my story here is that considered hijacking?

I will try to figure out how to message you.

Seenie, I am so sorry to hear this and my thoughts are with you as you try to come to terms with yet another blow from this (***add own expletive***) disease. I didn't know about bones fusing until I read Gladman & Chandran and I do now hope this happens quickly to ease your pain. And I hear you ..... I'm gonna ask to get my feet looked at/x-rayed again. Sending you lots of love.

So sorry Seenie. You're such a brave and inspiring lady-you deserve better than this. Warm wishes and hoping something helps the pain.

Oh, everyone … thanks for the sympathy but really this is just a cautionary tale. I didn’t write it to be fawned over, but I have to admit your kindness and your anger on my behalf is soothing.
For me the message is: get a rheumatologist you have faith in, accept the most aggressive treatment that doctor will give you, and don’t take a “wait and see” approach. Bad things really do happen to good joints with this disease.
PsA is a vandal and a thief: it wrecks your body and it steals your life. Crime prevention against vandalism and theft always works better than punishment after the fact. Same goes for PsA.
Thank you for your sympathy, everyone, but if my cautionary tale saves one joint from destruction in one person, my losses won’t have been a complete waste.
And thank you, my PsA family, for your very kind thoughts. (And even the odd *expletive!)

Can I break his/her kneecaps? Please?!? I'll get my hubby to trip them, and my son to sit on them so I don't hurt myself too badly in the process. Pleaseohpleaseohplease?

Makes me really really really really pissed to hear about how a doctor made assumptions that ruined another person's life. I'm not really a super aggressive person, but when I hear things like this my blood just boils. I really hope Karma is as big a B^%#$ as I think it is.

As always, Seenie, you are an amazing font of wisdom.

**note to self: get feet checked. Maybe the "plantar faciitis" is actually something much, much worse.

tmbrwold329, you make me laugh. But I don’t really wish the rheumatologist any ill – she was an absolutely lovely, kind, calm woman. I really liked her, which, I think was part of the problem. While she was calm and conservative, the little voice in my head was questioning everything. And yet I felt I had to trust her. With the wisdom of hindsight, I should have gone with my instincts, and sought a second opinion about eight months before I did.
Tmbrwolf, thanks for the lovely compliment, but I’m just a tough old bird who has been through more than I’d wish on anyone. And if I can help prevent similar misery to others, that, at least is a good thing. And yes, get the plantar fasciitis checked out!


Is there any way the dr's can facilitate the joint fusion with surgery (pins or plates immobilizing the joints so they fuse?) I've had it done on two joints in my hands, and to me, fusion is a miracle.

Marietta, you are so right. But the thing is, I have ten joints on each foot that are eroded to bone-on-bone. Those joints are in the tarsal region, where the bones are stacked up like lego. They can fuse two or three joints with screws and plates, but not ten. The only hope is that they fuse themselves. i am getting a CT scan which will tell the surgeon the stage of erosion/fusion, and one of the questions I will ask is what can I do to encourage the bones to fuse? A cast? An airboot? No weight bearing? I will do what it takes to move this process along.
Thanks for the encouragement!

Hello my gorgeous friend, I’m so sorry I haven’t written in a while, I had been getting quite down and buried my head in the sand for a while, avoiding any PsA related discussions/information. I’m so sorry your feet cannot be repaired - I feel for you immensely. My SI joints drive me crazy at times and mine is only mild sacroilitis! I can’t begin to imagine your pain :frowning: thank you so much for your bravery in writing this post to warn us all in regards to aggressive treatment. I took your advice long ago and pushed to have my PsA more aggressively treated and thanks to that advice I have had a huge improvement in my overall health and the redness and swelling of my joints has settled :slight_smile: I have felt better in the last 3 weeks than I have in the last 3 years!! If it weren’t for my persistent SI joint pain I would say I even feel “normal”!! I hope you are coping ok - you are so strong I know you can get through this xox

Seenie, I am so sorry the news you got isn't what you were expecting and certainly not what you wanted to hear. Unfortunately PsA has no compassion for its victims and that is made so much worse by doctors who choose not to treat it aggressively as in your case. You have always been an advocate for Early and Aggressive Treatment, due to your knee replacements and your hip replacement and other one pending, but I guess it takes on a whole new meaning now with your feet. Its a whole new ballgame knowing extremely painful parts of the body will not get better, cannot be fixed! What are you supposed to do with that information? How are you suppose to process that? Pain medication isn't a long term answer to anything and I guess in your case its a wait and see approach for those damned bones to fuse and then and only then will you find some sort of relief. My heart goes out to you and I am grieving for your feet along with you and so many others here on this site and within your group of family and friends. You have unintentionally become the poster person of what PsA can do to people if left untreated or not aggressively treated. Knowing you, you will pick up this role and ensure those around you will benefit from your situation to ensure they get the best treatment possible, the irreversible damage of your feet will not be in vain, you will not let that happen! Hoping those bones fuse quickly and that relieve will come to you soon. All the best to you and your family in 2014

Thinking about you always, sincerely


Judy, thank you. Sincerely and deeply. You are right: I’m trying to make the best of my situation. If my experience helps prevent one person’s grief, my experience won’t have been in vain. Thank you so much for your kind and very supportive words.

Yikes, Seenie, I'm so sorry that that happened to you.

I am so sorry <3

So now some good news. At the PsA clinic in October, I complained that my feet were still really tender. They said that it could be well into the New Year before the Enbrel might get to work way down there. In December, the orthopaedic surgeon did something which puzzled me: he took my foot in both hands, and held it there. Then he said “You have a lot of inflammation in your foot. I can feel it.” Incredible, no? But not happy news. I didn’t think my feet would ever stop feeling like firebombs about to explode.
Anyway, this week, the fires are dying down. At first, I thought it was my imagination. But now I know. The duvet isn’t hurting my feet in bed. I can stand without too much discomfort. (Walking still hurts, but it’s not the searing pain that it was.)
I think the Enbrel is getting a foothold. I am happy. Very.

Congrats, Seenie. I am SO GLAD your feet are doing better, and that the Enbrel is working for you. Sending congratulatory hugs and warm fuzzies your way!

LOL, I do not know how he did that. He held the foot for a good thirty seconds (which in a medical examination is l.o.n.g) and I was sitting there wondering what on earth … yes, pretty interesting and amazing. Thanks for the good wiishes!