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psoriatic arthritis- what were your early symptoms

39 replies

User129867588 · 28/12/2022 13:10

I’m 42 and 2 years ago I lost a toenail followed by one fingernail pitting over. No other symptoms until mid 2022 when I started with mild joint pain in my wrists and foot. Pain foot is on the joint with my big toe. My foot seems worse in mornings and goes through flare ups. It’s not excruciating and not stopping my usual activities but it’s there and can be uncomfortable at times. During a flare up if I step on my foot a certain way it can be very painful. Same with my wrist, it’s not constant but I feel some discomfort . In the last 3 months a second fingernail has pitted over and nails don’t look as healthy. I am starting to get a bit more concerned so have booked a GP appt for mid January.

I don’t have any psoriasis on my body.

I’m within a healthy BMI, have pcos and androgenetic alopecia linked to pcos but hair thinning so bad I wear wigs when out .

I follow intermittent fasting for last 2 years and have a good immune system since I started. I don’t catch colds /flu , didn’t get Covid when it made the rounds on two separate occasions in my house and I feel good apart from this niggling feeling about PsA

If anyone has been diagnosed, what were your symptoms?

thank you

psoriatic arthritis- what were your early symptoms
OP posts:
Batterball · 04/01/2023 13:22

Hi Op,

I have PsA and my first symptoms were nail pitting in fingers and toes. I had small patches of psoriasis on my skin, along my scalp and one tiny patch on my back.

Then I began to get joint swelling, in my hands mostly. My thumb was the twice the normal width for almost 2 years. It spread to other finger joints too.

I was misdiagnosed by a number of doctors and specialists and had periods of recovery when pregnant and breast feeding. Unfortunately the illness came back worse than ever once my breast feeding days were over.

I have arthritis in every joint, suffer swelling every day. My feet have gone up a shoe size from swelling and joint issues.

I’m on some heavy duty meds now that allow me to live a somewhat normal life. But periods of stress really affect me and set me back.
I also seem to brake more easily as I have had several breaks in a short space of time, whereas up to then I had never broken a bone.

tiredness, brain fog, a significant reduction in mental acuity were also symptoms.

I would suggest downloading a symptom tracker or keep a small note pad with you.
keep track of swelling, where and how long it lasts
insomnia
sleeping without feeling rested
Pain (use a pain scale)
any changes in vision (I have dry eyes which is also related apparently)
Anything that’s outside of your ordinary keep a record and record duration and severity.
when you see the doctor you’ll be able to give a comprehensive list of symptoms and severity.

best of luck to you and if you ever want to discuss just drop me a pm x

florenceandthemac · 06/01/2023 21:57

I am now being tested for this.
A couple of years ago my nails started lifting, then some were crumbling. I wear builder gel and put it down to allergic reactions to this.
About 10 months ago I lost two nails completely. Some of my nails have those blood splinters, they are all a disgrace but I manage to cover this mostly with gel.
Only realised last week that it is nail psoriasis.

About 8 months ago I developed pain in my lower back/hip. I put it done to sleeping on my front so have managed so far to avoid this most nights, but it’s still so painful in the night and in a morning, or when sat or stood still. The only thing that relieves it is moving. I do lots of exercise and don’t really suffer at all whilst doing this.

I’ve also had really painful eye and blurry vision, on and off, for about two years now. Frequent trips to the opticians told me it was dry eye.

It was only this week I read that nail psoriasis can often be a symptom of psoriatic arthritis, and when reading into the other symptoms, I realised that what I’ve mentioned above were also symptoms 😔

Been to the doctors today and was sent straight for an X-ray. Bloods booked in for the end of the month. I’m not sure how I really feel at the minute… Part of me would like an answer for these issues, and the other half would rather not have to be diagnosed with anything!

User129867588 · 07/01/2023 10:10

@Batterball Thank you so much for taking the time to reply and for those tips. I’m sorry you’re having so many symptoms now- the bones braking easily worries me. I have never broken a bone either. I have started to write a few things down. I have recently started with really bad brain fog too. ☹️ My appointment is this coming week.

@florenceandthemac sorry you’re also having these symptoms. The main reason I want to know is to try and help my joints from deteriorating over time. Take precautions and look after my health even more than I do now.

OP posts:
florenceandthemac · 08/01/2023 09:39

Just re-reading your post OP about the pin in the joint at your big toe. I've just realised I get this and have always put it down to my bunions. I have flat feet and have developed bunions over the years, and sometimes get this pain, but it's also a symptom of bunions so who knows.
When I take my gel polish off, I'll get a photo of my nails. They are extreme, hence why I constantly wear builder gel and polish. My own nails are just vile (the ones I have left).

Hopefully your appointment goes as well as mine did. I was sent straight for the X-ray that day. The only delay is the bloods which have a three week waiting list to even get them taken, then 2-3 weeks for the results

macaronip1e · 08/01/2023 09:56

My symptoms were quite different, but thought I’d share in any case! My main symptoms were joint stiffness and pain, in thumbs (mainly) and fingers, and also knees. My psoriasis is on my scalp, and is something I’ve had to limited extent since I was a teen. My joint problems flared up post-pregnancy.

I hope your appt goes well. I found the whole period of being assessed, diagnosed and starting treatment very overwhelming; however a few years on all is good - I’m on treatment that controls disease to the extent that I literally don’t think about it most days, as I generally don’t have any pain/swelling. There is some lasting joint damage in two of my fingers, so they don’t bend fully - but I honestly barely notice that, and since I’ve been on treatment there has been no progression in that damage.

SuperHandss · 08/01/2023 18:51

I’ve never had issues with my nails but I had scalp psoriasis as a teenager and when I was 29 a knuckle swelled up & that was the beginning of psoriatic arthritis. I’m now 37 and mid flare but I generally doing ok & not currently on meds as TTC.

SuperHandss · 08/01/2023 18:53

macaronip1e · 08/01/2023 09:56

My symptoms were quite different, but thought I’d share in any case! My main symptoms were joint stiffness and pain, in thumbs (mainly) and fingers, and also knees. My psoriasis is on my scalp, and is something I’ve had to limited extent since I was a teen. My joint problems flared up post-pregnancy.

I hope your appt goes well. I found the whole period of being assessed, diagnosed and starting treatment very overwhelming; however a few years on all is good - I’m on treatment that controls disease to the extent that I literally don’t think about it most days, as I generally don’t have any pain/swelling. There is some lasting joint damage in two of my fingers, so they don’t bend fully - but I honestly barely notice that, and since I’ve been on treatment there has been no progression in that damage.

May I ask what’s worked for you in terms of treatment? Once we finally conceive and have the baby I want to go back on meds to reduce risk of further joint damage.

I have one finger that doesn’t bend now but grateful it’s not worse!

AutumnCrow · 08/01/2023 18:58

My finger joints and finger nails were my first symptoms, when I was about 19-20 years old.

macaronip1e · 08/01/2023 19:21

@SuperHandss I’m currently on adalimumab (have been since summer 2019).

Longer story: I first took methotrexate, which needed dose adjustment due to liver side effects (that came up in blood tests rather than anything I noticed!). I then had sulfasalazine added as I still had joint pain. However, that didn’t do too much so was moved to adalimumab - which was a game changer. My rheumatologist said from the start that she thought I would need biologic treatment, so was quite quick to move through the dose and treatment changes to allow me to have adalimumab prescribed - by NICE guidance you need to have tried two different non-biologics with inadequate efficacy or side effects before you can be prescribed biologics.

SuperHandss · 08/01/2023 20:42

macaronip1e · 08/01/2023 19:21

@SuperHandss I’m currently on adalimumab (have been since summer 2019).

Longer story: I first took methotrexate, which needed dose adjustment due to liver side effects (that came up in blood tests rather than anything I noticed!). I then had sulfasalazine added as I still had joint pain. However, that didn’t do too much so was moved to adalimumab - which was a game changer. My rheumatologist said from the start that she thought I would need biologic treatment, so was quite quick to move through the dose and treatment changes to allow me to have adalimumab prescribed - by NICE guidance you need to have tried two different non-biologics with inadequate efficacy or side effects before you can be prescribed biologics.

Thank you so much! 😊

DiDonk · 10/01/2023 08:25

For me started with pain in hands, wrists and feet. Then knees. Always had mild psoriasis but mostly kept it down with creams etc.

I also has iritis several times without realising it was also a symptom.

Got diagnosed via a knee specialist who sent me to an arthritis doc.

florenceandthemac · 10/01/2023 18:00

@DiDonk can you please describe how iritis feels?
I've had on and off eye pain for two years, which the opticians called dry eye and left it at that (all of this was before I heard about PsA) but my eyes don't feel dry. I can only describe it as they ache when I move them, as if my eyeballs have changed shape and don't fit properly when I'm looking down!
It's worse when I wake up then gets slightly better but is still hurting now

DiDonk · 10/01/2023 20:15

It starts off a bit like conjunctivitis but then gets very painful indeed. You get red eye, but only in one eye and I always get pain, light sensitivity and headache

I hope you haven't had it because it's really serious if untreated - you can get glaucoma - and doctors will send you to an eye hospital if they suspect it - at least that's been my experience.

DiDonk · 10/01/2023 20:18

I think an optician would spot it too when they do the pressure test thing

florenceandthemac · 10/01/2023 20:25

I don't get red eyes but I get pain, headaches and light sensitivity.
It's on my list of symptoms to show the GP again when my X-rays and bloods come back

DiDonk · 10/01/2023 20:38

You are supposed to get it seen as soon as poss. I went to moorfields a&e the first time I got symptoms (lived in London at the time) and got treatment straight away.

User129867588 · 10/01/2023 21:16

@florenceandthemac
I hope so too. I always feel nervous and anxious at these kinds of appointments but will go with my list. Today I noticed my toenails look so ugly, some going yellowish and just have lines going through them and some have top layer peeling. My fingernails are getting worse and some have white dots and lines on them!

Sorry for all of you suffering with eye problems. That’s a huge worry for me ☹️

OP posts:
florenceandthemac · 10/01/2023 22:27

I have started compiling a list of my symptoms for my next appointment, as I can never think on the spot, and lots of them are things I haven’t previously linked to PsA but might be worth keeping a note of

psoriatic arthritis- what were your early symptoms
User129867588 · 12/01/2023 11:05

Back from appointment. Blood tests and xray of foot that is currently affected and a follow up booked for early February . GP wasn’t overly concerned

OP posts:
florenceandthemac · 12/01/2023 19:37

Good news on your tests. I've had my X-ray (could walk in same day) but my bloods are only on the 24th

DividedHouses · 15/01/2023 21:18

@florenceandthemac Might be worth asking your rheumy about Sjogrens (from looking at your symptom list), which I have, along with very high anti-CCPs. It's often seen side by side with PA and RA (and other AI issues). Good luck with your appointment.

florenceandthemac · 23/01/2023 07:34

How are you getting on OP?

User129867588 · 24/01/2023 19:41

@florenceandthemac nothing to update just yet. Had my X-ray last week and bloods this Friday, follow up to discuss results next Thursday so will update after that. Thanks for checking in. How are you getting on?

OP posts:
florenceandthemac · 24/01/2023 20:28

More or less the same as you. X-ray was two weeks ago but only had bloods this week so no point going back to the GP until bloods are back. However, I have got a pre-booked appt on the 31st which was booked to discuss my nails before I knew it could be PsA so I'll go to that and ask about my X-ray. I was told bloods could be three weeks.
Keep us posted on your follow up

User129867588 · 03/02/2023 07:30

Update: GP performed a whole bunch of tests including inflammation, celiac, rheumatoid and all came back within range. I’m a bit low on vitamin d, iron and my liver levels are on low side but not concerning.
I do however have moderate hallux valgus (bunion) on the toe they checked so am being referred to a podiatrist. This didn’t even cross my mind but now that I look at my feet I can see bulges on both and my toe not straight! Still no explanation about my nails but good that other markers are not pointing to RA or PsRA.

OP posts: