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Living with Psoriatic Arthritis (PsA)

Foot swelling - not just sausage toes


#41

Sadly, I have little to offer besides sympathy and personal experience; this PsA is an evil and unpredictable enemy! I spent a loooong summer with a swollen and painful big toe - years prior to my diagnosis - so I can only imagine dealing with the whole foot! My only bit of hope to offer is that PsA symptoms are also unpredictable, and that they sometimes simply go away or lessen dramatically; my toe, now fine, being an example. I’ve lived the walker phase in various other manifestations of the disease - very demoralizing - but right now I’m on my own two feet without assistance. I wish that for you, as well as the courage to cope with your foot.


#42

Thank you for the empathy Susan. It helps to know that I’m not alone, which is what I guess support groups are all about. I’ve starting wondering what tests those with PsA have had done to confirm diagnosis. I know that there isno definitive test for PsA, but it requires a combination of tests and factors. My rheumy did nothing really…a complete blood count and metabolic panel. Other than that he just said it was a “no brainer” that I have PsA because of my foot issues and pain in my joints. I know I am RA neg and negative for lupus. But still wonder if this is what I have.


#43

The answer lies in the kinds of joints involved, the swelling of those joints, and your presentation with fatigue, nail issues, family history of psoriasis, etc. It’s ALL taken into consideration before a diagnosis is made because there’s no test. If it walks like a duck, talks like a duck…

I know it’s really weird not having a specific test to “prove” your DX to the world, but your doc seems to think you’re in the club as your symptoms fit.


#44

I think a great deal of diagnosis depends on the skill/insight of the doctor; that said, I’d take an early diagnosis based on a gut hunch any day! In my case, it was 14 months; a knee replacement after an incredibly quick degeneration, followed by a 7 month “recovery” that really wasn’t much of a recovery at all, before the referral to the rheumatologist, and a blood test that revealed very high inflammation levels. My mom had psoriasis, so, even though I did not, he made the call - and still asks hopefully at every checkup if I have an outbreak, lol! But, the meds did work - finally! - and feeling much better, with no discernible progress of my symptoms, is fine by me for now. All of the autoimmune diseases seem to involve confusing symptoms and difficulty in diagnosis to some degree.

I guess this isn’t much of an answer! In my case, faith in my doctor knowing more than me was probably the main reason for accepting the diagnosis, and it was the right call.

Susan


#45

I’m smiling @Susan2. I got an early diagnosis, really early and spent the better part of a year trying to disprove it! I was horrified with that early diagnosis and thought it just had to be wrong. So I guess there’s no pleasing any of any of us:grinning:


#46

I totally understand what you’re saying Susan! My pain began early on in my 20s but no one took me seriously. But things really got bad in 2008 and when I finally begged for an x-ray of my lumbar spine in 2013, it showed severe facet arthritis. But that still didn’t explain the joint issues in my knees and feet. The problem with blood testing is that I have Crohn’s disease so my inflammatory markers are always elevated. I always wondered why I was older (42) when my Crohn’s was diagnosed. But now know that Crohn’s is a comorbidity factor with psoriasis, which I’ve had since 14. My father had mild psoriasis and my maternal uncle had severe psoriasis. So it is pretty much a no-brainer. Sad that it took going to 3 rheumys before the last one diagnosed. The downside is that my current rheumy did not consider something else going on with my foot other than PsA. I don’t think sudden nephropathy is a symptom of PsA. And it seems that an artery issue is the cause of the foot issues and not the PsA. I guess that is why I’m disappointed in my current rheumy…that he didn’t see my current symptoms as something more than the PsA. These last two months have been quite a journey. So glad you are doing well with treatment!


#47

Seems that many of the autoimmune diseases have similar treatment anyway, no? My mom’s initial diagnosis was polymialgia rheumatica, which seems odd as it followed 8 years of hard core medical intervention for the worst psoriasis I have ever seen, on both her legs! But, the prednisone they gave her, ultimately helped her a lot. (Of course, she was an old Maritimer who believed pills were an indulgence and a sign of personal failure, so she spent the last ten years of her life weaning off the pills, ending up hospitalized; then the process began again)
When my turn came, I said, “Bring on the meds!”


#48

Hey, wanting to _disprove _emphasized text__a theory gets you just as much learning about your condition as accepting it at once - maybe more!


#49

Sadly yes. Glad I learnt about it as much as I did, but boy was the acceptance bit hard…


#50

I agree! And I’m not sure I’ve entirely accepted it yet. Hard to find a balance sometimes between what I want to do and what will hurt/wear me out. I usually power through, then give myself permission to recover once the inevitable pushes back, lol! Turns out I’m almost as bad an enemy as the disease!
I am very grateful for the improvement my meds have brought. I’m 62, and spent the better part of two years feeling 85, walker and all. Now, I bet I’m more like a spry 70 year old, lol!


#51

I’m 55 and today I felt like something approaching 95. And I’m still waiting for meds to do anything at all positive Haven’t yet failed two DMARDS although I’m on my way to failing the second. So consequently I loved steroids to fill the gap but inexplicably I fractured my pelvis in June, no fall, no nothing, just increasing pain for two weeks till I was xrayed. So my first thought was it has to be the steroids. Took 3 months to get a bone scan - had it at end of September, but no results available for 6 weeks. Did take a short 8 day course of steroids in mid September as I was on holiday in the Lake District (so really realised how much I missed their ability to capitate me) and wouldn’t have been able to anything at all for it unless I chanced it. Rheumy really assured me I would be OK. I was. But boy am I missing those steroids now.

So I’ve decided I’ll have a temper tantrum tomorrow with this ridiculous 6 week delay on the bone scan results. A nice one but a determined one so that by the end of tomorrow I at least know whether steroids are OK to take or not. Next appointment to assess failure of the second DMARD isn’t until 15 November and I’ve no chance of bringing it forward. I truly love the NHS but sometimes it’s long delays are too challenging…


#52

Happy birthday! I had to laugh at your comment because I turned 57 on Tuesday and told everyone I was 97 in pain years. I hope you can find something to help. Why on EARTH does it take six weeks for bone scan results? That’s crazy!


#53

1 - 3 weeks is normal in a large academic center. Six weeks does seem a bit long. A nuclear study is not read by a radiologist (although he may give a preliminary report without detail) The actual interpretation comes from a “nuclear Medicine Physicist” and there aren’t many of them around.who then passes it off to another type specialist (it varies depending on what the reason for the scan is) Each “hot spot” is likely to have a different meaning so has to be broken down spot by spot.A hot spot could be a problem, antiacids (bizmuth) age etc its isn’t a quick look and the answer is known . If it is a full body scan it can take 12 or more hours to “read” onece each spot is figured out then they have to match it to symptoms and send it back to the physicist. I’m frankly surprised with centralized services such as some HMOs or the NIH they ever get results.


#54

@kris1010. It’s not my birthday though, that’s not till January… but you made me smile which was much needed.

@tntlamb as regards the NHS and its delays, I just sigh but remember other than the tax I pay, it is free. But the person I’m having to phone later on today is just a nurse. But thank you, I’ll now ask for the name of nuclear medicine physicist who read it too. As no medical history was taken whatsoever for the purposes of the bone scan I can’t imagine how the person reading it would deal with any hot spots. I can’t help thinking though that if I had rampant osteoporosis (which I truly don’t think I have), why on earth should I be hanging around for 6 weeks to find out. Surely that’s not right?

On another note I had a full MRI od my spine done yesterday so it will be interesting to see the results of that. They apparently come in in around 2 weeks which seems far more sensible.


#55

Here’s a thought that a fellow PsA sufferer will appreciate. I am 62, and waiting impatiently to turn 65, when my meds become free! Not since my early teens have I wanted to age quickly!
I was VERY lucky to tolerate Leflunomide, as it allows me to stay under my insurance plan’s maximum. Makes me happy that I have the ever so costly biologics as my “next step” - hopefully, long after I hit the magical 65…


#56

Ha! I read your post as “I’m 55 today” instead of “I’m 55 and today…”. That’s what I get for reading too fast! But glad I made you laugh.


#57

Susan, that sounds like a viable strategy. It’s your disease and your call how you handle it.


#58

Love @kris1010. It’s precisely what I do too, far too much.


#59

Please stop @Susan2 at making me wish my life away. Made me truly laugh out loud. Thank you.


#60

My feet and ankles are always swollen to some degree. I don’t take anything for it. My rhumetologist dosen’t seem too concerned about it. It has just become a fact of life for me. When they are bad, my husband rubs them in a stroking fashion from toes up to ankles to lower legs. It feels great and loosens the puffiness. I’ve tried ice packs but they sting and don’t really help the swelling. Keep your feet elevated as much as possible and wiggle your toes and point and flex your toes often.