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Psoriatic arthritis

173 replies

AnnaMolly06 · 12/07/2020 06:15

I suffered with psoriasis for a couple of years in my teens that wasn’t really treated, Gp gave me a prescription for e45 and sent me on my way. It cleared up after I got really sun burnt on holiday and I hadn’t really thought about it until now, over a decade later.

For the past couple of years I’ve struggled on and off with painful swollen joints, bad toenails, swollen toes and now this year my psoriasis is back, mostly my ears and hairline but the odd patch on my thighs, arms and hands and I had a nasty bout of uveitis a few months ago.

Researching the uveitis made me aware that all of these things can link up to psoriatic arthritis and prompted me to go back to my Gp about my joint issues. The Gp has now taken me seriously and has put in a rheumatology referral and has asked me to go for blood tests.

Anyone that suffers with this, I just have a few questions.

At the moment I’m trying to manage the joint pain with 500mg naproxen twice a day but it doesn’t actually seem to be doing anything. Would I be ok going back to my Gp and seeing if there is anything else they can offer me? I kind of feel like, because I haven’t actually had a diagnosis, that a request for different/ stronger pain meds will be rejected.

Can taking naproxen alter the inflammation markers in my blood results? I don’t know why but I’ve always felt like, whenever I’m ill or in pain that people don’t believe me, and I’m concerned that if my blood results don’t show anything, that they’ll think I’m making it up or exaggerating the pain. I know it sounds ridiculous but after 2 years of putting up with this pain in my joints I’m so tired and down about it all that I kind of need it to be something that can be proved by blood tests/ xrays etc so something can finally be done.

Finally. How does the diagnosis process work? Can anyone tell me what other tests they had? How long it took from the first rheumatology appointment to getting a diagnosis? What medication were you started on?

I’m sorry this is so long. I’m a bit of a worrier and I like to be prepared and know as much as I can about what it is happening or is going to happen.
I know different areas have different protocols so how it worked for one, doesn’t mean it will be the same for the next but I think this might help me a little if someone doesn’t mind sharing their experiences with me.

OP posts:
IWishTheBishopWell · 18/03/2021 14:47

I think there are several different biologics out there so it's worth looking at whether one of the other ones might be suitable if Humira doesn't work out. You'd probably be best off speaking to one of the psoriasis/arthritis charities and your DH's Rheumy though as your DH's situation sounds quite specific.

NHS lists some of the different biologics here: www.nhs.uk/conditions/psoriatic-arthritis/

IWishTheBishopWell · 18/03/2021 14:50

On a separate note I am still without answers, haven't been contacted by Rheumatology since my abnormal ultrasound the weekend before last.

The sonographer advised me to chase after a week which I have done twice, the secretaries have said they will chase but no news yet.

Londontown12 · 18/03/2021 15:30

@IWishTheBishopWell
Keep badgering them don’t keep waiting otherwise u be waiting forever !
I was supposed to have telephone call Friday it was cancelled no one told me thou so I badgered them and actually got to see rhumy nurse yesterday missy started me in sulfasalazine fingers crossed 🤞 it works !
@Daydreamunderstars
There are lots of different treatments if your oh is not getting on well with what he’s on now x x

Daydreamunderstars · 18/03/2021 21:04

Thank you for assurance :).

I am a worrier :(. I am not at all proud of it and my DHs liver readings have taken me on a negative spiral Sad.

However, your answers have been reassuring Halo

IWishTheBishopWell · 20/03/2021 09:15

@Hairobsessed123 - will do! I rang on Monday and again on Thurs. Not heard anything but hoping a letter may be on its way to me.

It's annoying as the ultrasound showed what the sonographer described as 'severe inflammation' and I want to know what that means! If it means an inflammatory arthritis then I want to know so we can start treatment. I have an office job (WFH atm) so if I have arthritis in my fingers I want to tackle it as they are painful when typing.

That's good news for you re: sulfasalazine! I hope it helps Smile

@Daydreamunderstars Flowers

I'm a worrier too so I know how hard it is to try and switch things like that off. Does your DH have a Rheumy appointment coming up so you can ask his doctors what needs doing?

Daydreamunderstars · 21/03/2021 09:37

Yes @IWishTheBishopWell. He has, and also they said they needed an ultrasound of liver as his reading have been only going up since last two bloods.
Fingers crossed, I hope that its something that can be reversed. I am trying to not to think of it but its too hard as I have put myself in a very vulnerable position and it will devastation will be in various multiple levels .
praying with tight clasped hands

IWishTheBishopWell · 22/03/2021 13:42

I got my PSA diagnosis by letter today. US showed arthritis in my DIP joints and also inflammation in some other finger joints. Left elbow normal which surprised me as that's the dodgier of the two but I have slight tendinopathy in the right elbow.

Rheumy has sent me a leaflet on sulfasalazine and a leflaflet on PSA from versus arthritis. They're going to send me an appointment letter to discuss meds.

Feel relief that I have a diagnosis and can start some treatment.

@Daydreamunderstars - I had a liver ultrasound 11 years ago as I had something in my blood which should have been in my liver. The US showed my liver was normal, it was just a side effect of my meds which caused the proteins or whatever they were to be found in my blood. Apparently it's quite common for some meds to affect bloods in that way. Bloods went back to normal when I stopped the meds. So hopefully it is something similar for your DH.

Daydreamunderstars · 22/03/2021 13:50

Thank you @IWishTheBishopWell.. I hope so too.
I am sorry on your PA diagnosis but atleast the ball will roll now...
I wish you all the best in your jouney Smile

Londontown12 · 22/03/2021 14:21

@IWishTheBishopWell
That’s great news u finally have diagnosis!!
I started the sulfasalazine thirsday 1 tablet a day for 1st week 2 x a day 2nd week 3 x a day third week and then 4 a day on 4th week onwards it’s only been 5 days no side affects as yet !!
Wishing u the best xx

IWishTheBishopWell · 23/03/2021 15:03

Thanks Smile

It's all rather a lot to take in but am pleased some form of treatment is now imminent.

The fun part is trying to explain to my parents what psoriatic arthritis is. They know what osteo is as they both have it and they know what rheumatoid arthritis is but they are drawing a blank on PSA.

It's like when I had to explain my dyspraxia diagnosis to them all over again 'but you're good at reading' Hmm

Does anyone else find PSA hard to explain?

Londontown12 · 23/03/2021 15:39

Totally understand it ! People say they never heard of it ! It’s very similar to rheumatoid arthritis but this also affects tendons as well as the joints and your skin that’s what I say anyway !! X

Daydreamunderstars · 23/03/2021 16:22

We get that a lot. Firstly not many know that people below 60 can get arthritis. Secondly, they dont know a skin condition can turn into a joint condition.

I just say 'arthritis' to my friends... to make my life and their life easy Wine

IWishTheBishopWell · 15/04/2021 08:44

Turns out 'some form of treatment' is not imminent for me after all.

I rang Rheumatology the week of my diagnosis to double check whether I need to make my follow up appointment to discuss meds or if they will contact me. They said they will contact me but that it won't be for 'weeks' as the clinic is closed due to Covid and they don't know when it will be able to re-open.

The Rheumy's letter said that although I hadn't got on well with anti-inflammatories in the past they advised me to find a suitable one as the first line of treatment for PsA.

So I did an eConsult for my GP surgery to ask if they could prescribe a suitable anti-inflammatory due to the delay in seeing Rheumy and because the pain in my fingers is causing me to have issues when typing for work. Unfortunately GP refused due to my reaction to ibuprofen previously and advised me to take paracetamol instead.

Argh!

I've been looking at a facebook group for people with PsA and other people seem to be being diagnosed face to face at other hospitals and on meds within a week, despite Covid. So it looks like I've been unlucky that my hospital's Rheumatology department is still closed.

Londontown12 · 15/04/2021 09:00

@IWishTheBishopWell
That’s crazy !!
You should be on some kind of treatment !
The longer it’s left the worse it can get !
I know the dmard that I’m on does have anti inflammatory properties but there are so many different medications ! Where I am they are now opening up some face to face appointments now xx

IWishTheBishopWell · 15/04/2021 14:57

Tomorrow will be 3 weeks to the day since I rang Rheumatology so will try them again. They said they would write to me with an appointment once the clinics had been rebuilt but warned there was a backlog.

It's a bit anxiety inducing because when you read stuff about inflammatory arthritis like PsA and RA the articles keep saying to seek advice if you have symptoms because of how essential it is to be diagnosed - and start treatment - quickly.

Londontown12 · 15/04/2021 17:35

Exactly @IWishTheBishopWell
I hope they get back to you quickly keep badgering them!!! X

IWishTheBishopWell · 20/04/2021 09:46

Managed to speak to Rheumatology, next time the consultant I saw is in they will ask whether I need to see the consultant at my next appointment, or whether I can see a nurse instead so that they can get it booked in. They said it shouldn't be too long a wait to be seen, so fingers crossed!

Dementedswan · 30/04/2021 20:30

Is it a massive battle to get a diagnosis of psa? I've had psoriasis since teens, only time I was completely clear was in pregnancy. I'm now mid 40s. I have scalp psoriasis, knee belly button, lower back/hip area. Finger and toe nails. Tried every cream going. Knee problems, diagnosis of sciatica and costroncontris in past. Now having trouble with my wrists. Docs have requested photos of psoriasis for them to consult with dermatology. Could this be psoriatic arthritis?

FigDate · 04/05/2021 05:05

@Dementedswan
Yes is could well be. Ask for a referral to Rheumatology.

IWishTheBishopWell · 04/05/2021 08:07

I agree with Fig @Dementedswan - you need a referral to Rheumatology if you have joint pains and psoriasis.

You may need to push your GP a bit to refer you, highlight your nail psoriasis as that is more common in people with PsA compared to those who have psoriasis without PsA. If it helps my Rheumy said they want to see anyone with psoriasis who has joint pains so they can be assessed for PsA.

Dementedswan · 04/05/2021 09:38

Thank you for your replies @FigDate and @iwishthebishopwell.

Gp has requested photos of my psoriasis and forwarding them to dermatology as its not responding to the strongest creams they can prescribe. I've also had hospital scalp and psoriasis treatment in the past which didn't work very well. Just came straight back. I've also sent pictures of my hands, feet and nails.

user1497873278 · 05/05/2021 11:52

IWishTheBishopWell, hi Ian on Naproxen and my toes are agony swollen red and go purple with awful throbbing pain, was this what you experienced I’m currently being treated with herniated discs but pain is all in feet, thanks in advance

IWishTheBishopWell · 09/05/2021 15:42

@user1497873278 - ouch, that sounds painful! My toes have been mostly normal, bar the detachment in my toe nails.

I was mostly referred to Rheumy due to swollen elbows (which aren't PsA according to Rheumy), nail issues and pain in my achilles tendon. Current issues are in my fingers and lower back, plus the odd bit of knee and hip pain.

However it is common for PsA to affect the toes and dactilytis (where your whole toe swells up) is a sign of PsA. Your symptoms sound like they warrant you seeing a Rheumy. Has your GP referred you? I would ask to be referred if not. Take photos and send to your GP if they won't see you face to face.

(I haven't seen a GP since March 2020, I sent them pics of my toenails detaching and described my symptoms and they did bloods and a Rheumatology referral based on the pics and symptoms).

IWishTheBishopWell · 09/05/2021 15:59

Did you have any joy @Dementedswan? I hope GP refers you to Rheumatology as well as Dermatology.

NeverDropYourMoonCup · 28/05/2021 22:09

Hope everybody's doing OK.

I've been on Cosentyx for 9 months now and it'll take a very persuasive consultant to get me to ever agree to stop taking it. I've never had a medication that I felt so positive about (usual side effects include puking up, no positive effect or, best of all, being allergic to it immediately or developing an allergy to it during the course of taking it glares at all anti inflammatories and Humira ) apart from steroid pulses, which are brilliant, but have to be treated with a healthy respect.

I've had a big flare of Psoriasis over early Spring - scalp, inverse, feet, arms, torso, hips arsecrack and the GP was quite happy to take my word for it over the phone after I said I'd used Hibiscrub in the bath to make sure it wasn't a fungal infection before requesting an appointment. Which was good, as I didn't fancy sending him photos of my huge backside. He prescribed 2 strong steroid ointments and one strong steroid lotion, so I spent February to mid April being significantly more flammable than normal humans. But it's definitely much better now.

I've got ongoing tendinosis around my right hip, left ankle (not just the Achilles) and multiple sites of bursitis due to not being treated effectively for 45 years but now the actual joints themselves are behaving relatively well, it's time for the EDS to shine through. I'm having physio once a month, will qualify for hydrotherapy once I've lost a stone, as they've reduced the weight limit for emergency evacuation/lifting in case of passing out since Covid and pick up my fancy custom orthotics from the hospital next week.

I've had telephone appointments with the consultant several times and they work quite well, as she's used to my being able to say 'well, there's a lot of sacroiliac joint pain right now, my left peroneus brevis is playing up and the fifth metatarsal feels like a teenager has stomped across it with a pair of Doc Martens on, but I'm working on proprioception and activation of the gluteus medis, but it's very sore and I don't think it's necessarily iliotibital band syndrome, it's more greater trochanteric pain...'

Once I've got the orthotics, I'm off to the running shop for some new shoes and, the following day, I've got my first day in a gym for a couple of years - I desperately need to strengthen and stabilise my joints now they're not so swollen and locked up. I rely mostly upon the rowing machine and weight machines for safe, controlled movements. I'm slightly put out that DP, despite knowing I am an utter gym snob, has taken it upon himself to pay for membership at the cheapest, most basic gym in town because there's no contract and it's under £20 a month - but I'll give it until either I've seen an improvement enough to start being a total princess - or he gets put off by the utter cheapness - and agrees to pay for the fancy pants gym and pool that is literally 50 yards away from this bare bones one.

We've started going out and walking/jogging round a local park twice a week - I've been working on changing my gait to a forefoot strike to reduce the forces exerted on my lower body and so far, I've managed 30 minutes of walk - trot really slowly - walk again. Which feels really good compared to not being able to hold a mug or put my own socks on.

Anyhow, wittering on as I am, I wanted to say that getting through the initial hoops for diagnosis can get you to a position where you're actually able to consider doing physical stuff for practicality and pleasure, rather than just dreaming of being able to get dressed by yourself. I've even had some mornings where I've woken up and thought 'What? What is this? What's different? Oh. NOTHING IS HURTING'.

It might only last for a couple of minutes. But, still. Sometimes, NOTHING HURTS.