Hello lovely people.
I’m currently off all meds for 18 months, trying to see what my baseline is (and avoid another bout of encephalitis).
It’s been interesting seeing what my symptoms actually are and figure whether it actually is PsA (I don’t have any psoriasis, but my brother has PsA).
Currently I have bilateral Achilles pain, sore feet/toes, sore hands, morning stiffness (in fact stiffness whenever I haven’t moved for a while), sore left elbow and other random pains sometimes.
Also benign paroxysmal AF, familial hypercholesterolimia and duverticular disease to give a full history I’m 49.
I also get slightly restless legs if I haven’t been for a walk that day (try and do a couple of miles a day), eased by getting up and moving around. I also get hypersensitive hands and feet/legs at times, possibly burning sensations, mainly when I first wake up. I think it is possibly worse when I’m taking NSAIDs occasionally, though not really sure.
I have been on benepali, humira and tifacitinib in the past, plus long term omeprazole. None effective.
I think the joint pain and enthesitis probably are PsA, but less sure about the burning /hypersensitivity.
I guess what I’m asking is whether these are PsA symptoms, could be permanent side effect of past meds or something else entirely? Recent rheumy visit couldn’t get a word in edgeways, had his own agenda, so in the dark a bit.
Thanks for any advice and stay safe xx
Hello lovely people.
I’m sad to hear the Rheumy visit wasn’t good - you need to be able to have a proper discussion with your Rheumy - is seeing another one an option?
With reference to the rest, certainly stiffness and pain in the morning and after being still for a while is pretty characteristic of any inflammatory arthritis. Having troubles with tendons seems to be more common with PsA, but can also happen with others including Rheumatoid (which can be seronegative- negative on blood tests).
For the hypersensitivity, do your hands and feet also go red and hot? If so you might like to look up Erythromelalgia. I’m not aware of any connection with PsA but we do have a member that has talked about it.
PsA only requires a family member to have psoriasis, though you might be surprised if a dermatologist looked systematically at you - there is a lot of P that masquerades as other types of dermatitis, and looks very minor. That is all I have.
Diagnosis, as you’ve guessed, is really hard, and none of us are medical professionals, so I’d really encourage you to seek out a good Rheumy to help you resolve this.
Thanks Jen75 for your very thorough response.
Don’t think another rheumy is an option; however, he has ordered xrays and ultrasound and then I’ll see the rheumy nurse to discuss treatment options, if I want them. I generally find the nurses much better, more time to listen, so we’ll see.
My hands and feet don’t get hot or red, just like burning or super sensitive when I wake up, like they’re waking up too. Just wondered if other people had experienced similar?
With regards to psoriasis, I do have dry skin sometimes and am really prone to itchy rashes with sun exposure, so who knows. My grandfather apparently had bad psoriasis and my brother too, mum has very sensitive skin.
I’m thinking it probably is PsA as was originally diagnosed, but we’ll see what comes of the tests. Fortunately it’s currently fairly mild, though middle of the night trek to the downstairs toilet doesn’t always feel that way!
I have burning in my feet due to neuropathy. It’s never fabulous, and it’s definitely very noticable when I’m trying to sleep. If I have an alcoholic drink I have to cool off, especially my feet. Makes me very pleasant to be around.
So sad to hear of your rheumy experience. Remember you are close enough to Bath (from memory) for a referral there for a second opinion under the NHS. And most certainly you can be heard there too. As you know that where I go. And they don’t believe in doing ultrasounds they prefer to do a PsARC. Did your rheumy do a PsARC on you - if so what was you joint count in comparison to previous joint counts as that’s a real good indicator of disease activity and progression. If he’s not doing a PsARC why isn’t he given the NICE giudelines? Ammunition for a second opinion route under the NHS too. You have every right to a second opinion too. And might be just the thing to give you more clarity too.
Here’s my two pennies on the burning issue.
First burning soles of the feet is a real PsA thing. Always indicates to me an increase in PsA activity anyhow and to lots of others I know.
Secondly enthesitis and plain inflammation, and not just at insertion points, can also give an intense burning inside the skin rather like that horrid playground game of giving eachother a twist on the skin of your arm. That for me is definitely an indicator of PsA disease activity. I can remember well when PsA first hit me of this intense burning in my hands and feet too. Sometimes it was so intense it made me cry. I just to sit there rocking back and forth in tears.
Same as regards restless legs although a magnesium spray from somewhere like Holland and Barrett can help those a lot as can just taking some magnesium too.
I don’t think the burning or restless legs is anything to do with meds and probably is far more to do with PsA. Useful however to exclude or identify any neuropathy though. Very useful.
Hope this helps.
Thanks so much, thorough as ever
I’m going to see what the test results come up with and then decide if I want to ask for a Min hospital referral. It’s a shame, as the other rheumy on the team is excellent, as are the rheumy nurses, it’s just this one!
I’ve started taking magnesium to see if that helps at all, we’ll see.
I’ve also now developed peroneal tendonitis and swelling on my left foot, I think I’m definitely more prone to this. A year or so before my diagnosis I had plantar fasciitis, then it’s moved to achilles, now peroneal. My calves also get sore, but that could be referred pain from where everything around it is tight.
He did do a joint check, though not the full one like the nurses do recording each joint.
Anyway, we’ll see. As a health professional myself I just get so frustrated when a medic is as far from holistic as you can get and just doesn’t listen.
Hope things are okay with you. Off to get my COVID booster later, never thought I’d be so pleased to get a jab!!
My very first PsA symptom was simply crippling peroneal tendonitis in my right foot/leg and Achilles tendon issues in my left foot. As I was recovering from a bunion correction operation on my right foot. Shortly after all the tendons in my right hand joined the party and my hand literally blew up like a blown up rubber glove. It did it over a couple of hours on a Friday evening and it was so concerning I called 111 who sent an paramedic out as they thought potentially I might be having some sort of stroke! I wasn’t I was developing PsA.
Since my second Covid jab wasn’t done until 1 May, I haven’t been called yet for the thiird booster. In my area they’re up to end of March now for dates of second jabs on the ones who need a third booster.
I have heard (from someone who recently attended Bath) that us lot will be getting a 4th Covid boster 6 months after our third one. However it does strike me that it might be more useful to properly antibody test us at some stage. Many of us will be developing antibodies just fine according to the trials but some of us won’t be. And maybe it’s those ones who need to keep having boosters to ensure the immune system is at least ‘remembering’ Covid if nothing else.