Psoriatic arthritis

[AnnaMolly06]

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.

I'm sending you some virtual impressed vibes for your clear skin

I'm still off the Imraldi so was expecting a massive flare-up of psoriasis, but it hasn't happened yet. Blood test Wednesday morning, and will probably inject again after that.

Then another blood test in 4 weeks.

My joints meanwhile are getting worse. X-Ray on my left knee next week. Sigh.

I just feel there's no end to this. Every treatment just creates new problems.

Hope all went well with the blood test today Jamie.

Good to hear that your psoriasis hasn't flared up now you've come off the Imraldi.

Hope all is well with you too Anna now you have your diagnosis and will soon be on treatment.

I am now counting down the days until my appt in 3 weeks time. I had to cut my finger nails at the weekend as one had a chunk of detachment which is the largest I've had on a finger nail to date and made me feel sad. I'm also seeing a few more pits appearing but they're only noticeable up close. I must motivate myself to paint my nails soon (I find the varnish sticks in the pits when I remove the varnish and shows up small, shallow pits that are otherwise hard to see and shows them up better in photos).

Hi all. Hope you're all as best as can be.

@JamieLeeCurtains I really relate to the treatment making things worse. I'm still struggling with the after effects three weeks on from one dose of methotrexate.

My UVB lamp seems to be working. I've had some peeling skin on my hands but no patches.

Had a letter from the hospital today which I worried would be a 'sorry, cancelling due to Covid' letter. Was pleasantly surprised to find it was confirming my appointment would go ahead and outlining the procedures I need to follow on the day re: handwashing and not turning up if I have a cough or temperature or have tested positive.

It was dated 27 October though so I hope Saturday's announcement hasn't changed anything!

How is everyone doing?

Hello all! Goodness, isn't this all getting difficult now lockdown is upon us again?

So now I've got basal cell carcinoma (shin and torso)*, which is an unexpected curve-ball, and an x-ray of my knee tomorrow to confirm osteo. Back on Celebrex for that, and Zapain, so I can walk.

My skin is still good but the Imraldi is probably in the balance.

Even more blood tests to follow.

I just want to go up the Nile on a long, slow cruise, doing a lot of lounging and grape-eating. Unfortunately I'll be lucky to get a day out in South Shields with a cheese & coleslaw stottie.

But we persevere. Because we have to.

The cat's got arthritis as well

*It'll be the decades of UV for psoriasis

Sorry to hear you have BCC Jamie hope you're feeling otherwise well and also that all went well with the knee xray.

DH (who has plaque psoriasis) is pushing for a trip to the Holy Land and the Dead Sea when normality returns if it turns out my rashes and/or nails are P and not a fungal infection as 'it could treat us both!'

My childhood cat developed arthritis at around 17 and the vet prescribed special expensive medicated biscuits for her. It was amazing how well it worked, she suddenly started leaping up on to the furniture again. My Dad who was in his late 70s at the time with osteo was a bit miffed that the cat had more effective meds than him!

Thanks, @IWishTheBishopWell.

The x-ray was fine, I was seen on time and they let DP come into the waiting area as I was on crutches and a bit off-balance. (He sort of takes my arm to stop me going arse over tit.) If it had been busy he'd have gone outside though.

I've also got physio movements to do.

Anyway, loving the arthritic cat story! My vet has given us Metacam (anti-inflammatory) to try, so will start her on that tomorrow. She's 15, nearly 16, so I want to make her feel more comfortable in her autumn years iykwim. She's already had steroid injections so got to watch her kidneys.

@IWishTheBishopWell

Sorry to hear you have BCC Jamie hope you're feeling otherwise well and also that all went well with the knee xray.

DH (who has plaque psoriasis) is pushing for a trip to the Holy Land and the Dead Sea when normality returns if it turns out my rashes and/or nails are P and not a fungal infection as 'it could treat us both!'

My childhood cat developed arthritis at around 17 and the vet prescribed special expensive medicated biscuits for her. It was amazing how well it worked, she suddenly started leaping up on to the furniture again. My Dad who was in his late 70s at the time with osteo was a bit miffed that the cat had more effective meds than him!

Love the cat story

I'm managing on oramorph, co-codamol, Celecoxib, and sunbeds for now.

Actually been ok recently. I'm learning a Dvorak keyboard, which is helping me get less pain from typing at work.

I'm learning a Dvorak keyboard

I'd be really interested in hearing more about this, @TheBlueStocking, and what you think of it?

Glad everyone's enjoyed the arthritic cat story, sadly she is no longer with us having died at 20.5 years old but the meds were quite remarkable. I'm sure Dad was eyeing up her medicated biscuits for himself!

Just googled Dvorak keyboard - interesting, I've never seen a non qwerty keyboard before. Would also be interested in how it's going.

9 years ago I had an ergonomic keyboard in an agency job which was brilliant once I got used to it. Will have to consider asking work for one as my wrists are sore so maybe it will help.

Hi everyone, so glad to have found you all! I'm am currently waiting results as my GP believes I may have PSA. This would follow 9 years of skin complaints and approx 4 years of varying joint pain. I already have hashimoto thyroiditis and pernicious anemia. The GP originally suspected lupus from the rash but, after finally getting an appointment during a proper rash flare, he changed his mind. I think my swollen finger joints,pitted nails, vision problems and creaking knees also gave him some extra thoughts on the diagnosis.
My main concern at the moment is my vision which can sway between slightly fuzzy to downright blurry. I had a sight test at the start of the year and new glasses but its deteriorated again now. Has anyone experienced this?

I haven't had the vision issues, no - I'm just generally, boringly shortsighted. I do have hearing problems, though.

Peppa I would seek prompt medical advice re: your eyes/eyesight. People with inflammatory arthritis are at greater risk for uveitis which can be serious and needs dealing with asap.

Read the section on eyes here: www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

My uncle has ankylosing spondylitis and has had issues with uveitis.

In terms of my own eye sight, I had regular tests as a child as my maternal grandfather is blind. He was born with sight issues but mine was fine as a child. At 22 I was given glasses for distance and within a few months was told I needed to wear them all the time. I changed my prescription about 3-4 times in under 2 years so was sent to various specialists for tests due to family history. Nothing was found bar a congenital defect with my optic nerves. I'm short sighted with astigmatism.

My eye sight suddenly improved at 25 (never knew that was possible) and my current prescription is weaker than my strongest prescription from years ago. My prescription has been stable since then - I've had my current glasses since 2014.

My eyes are horribly dry though and I need to use eye gel and drops. I was nearly refused contacts for my wedding due to how dry they are. I also have a dry mouth and a specialist I see for another condition has told me to ask the Rheumy to consider the possibility of Sjogrens. My appointment is a week today so not long to wait!

Hi all, I’m sorry I keep dipping in and out of this thread.
How is everyone?

@PeppaPigMakesMeGrrrrr how are your eyes?
I had uveitis back in April which is what made me contact the gp about possible Psa, it’s not nice but cleared quite quickly with steroid drops.

@IWishTheBishopWell and @JamieLeeCurtains how are you both getting on now?

I had my nhs appointment this week and have had Psa officially confirmed, the rheumatologist I saw hadn’t had the report from the private consultant but still agreed with his diagnosis. I was worried at first when she said she hadn’t received it but I took her agreeing with diagnosis as a sort of definite, second diagnosis so any doubt I had has gone.

I had lots of xrays and bloods done and I’m waiting for the nurses to ring to start me on methotrexate.

I have a question though, she has put me on a tapering dose of prednisolone, and I’m not liking the side effects.

I go from feeling really jittery, to needing to sleep after I’ve took them.
She said to take them in the morning as they’d stop me sleeping which I understand from the jittery feeling but I don’t know if the exhaustion is from the steroids or just a mix of the normal fatigue I’ve had for while mixed with pmt

Either way it’s a really odd feeling and I’m not sure if I should contact her to check.
Has anyone else felt like this on them?

She has also upped my Etoricoxib dose which I now take at night and I think that might actually be helping, the pain hasn’t completely gone but it has definitely been a little bit easier in the mornings

Anyway, I’m looking forward to starting the methotrexate and really hoping it works so I can try and get back to normality for the kids.

I’ve spoken to their school today, just to make them aware of my diagnosis as the kids have been asking questions and felt they could probably do with a bit of support when I do start taking the methotrexate in case I do suffer with the side effects.

I’m really sorry if this is quite rambly, I feel like I’ve had 30 cups of coffee

I have reported my name change fail 🤦‍♀️

I have taken Prednisolone after an asthma attack @AnnaMolly06. They don't call Prednisolone 'the devil's tic tacs' for no reason.

I too had symptoms with it which other asthmatics and my asthma nurse and the A&E doctor warned me about. I just felt so strange. I felt jittery and anxious, like something awful was about to happen. I also kept getting thoughts that I would die even though I could rationalise that I wasn't at the same time. Like when I was trying to get to sleep I would have the thought that I wouldn't wake up again. I remember being exhausted too but that may have been due to the active chest infection I had which lead to the asthma attack in the first place.

I spoke to my asthma nurse after several days and was assured the drug was helping keep me alive by preventing a repeat asthma attack and my side effects were to be expected which helped me cope with them. It did improve gradually throughout my time on them as well which helped.

So I would speak to the nurse and see what they say about your side effects. Don't suffer in silence

I'm glad you're now in the NHS system and have your diagnosis confirmed. Methotrexate has worked really well for my grandmother's RA so hopefully it will help you.

I'm doing ok, anxious about my Rheumy appt. on Monday due to Covid risk. DH is having to stay in the car after driving me there (I can't drive for medical reasons) and will do some work on his laptop.

I've found out I have a female Rheumy which is a relief as I have a rash which looks like inverse P somewhere sensitive that I would feel happier showing a female doctor rather than a male one!

I’ve never heard of them being called that before but it definitely makes sense.
The exhaustion seems to have disappeared for now so I’m making the most of having some energy for once and I think the mix of the steroids and increased etoricoxib dose is actually doing something for the pain, I’ve managed to sort tea/ bedtime with minimal pain for the first time in months.

I hope your appointment goes ok on Monday, I understand what you mean about having to be on your own, it feels so daunting. Usually my partner wouldn’t come into appointments with me but just having him in the waiting room helped.

Is there over the counter creams that help with inverse psoriasis? It must be so uncomfortable there
Sorry, I don’t know too much about the skin side of it as I only have minimal guttate psoriasis that doesn’t really need treatment.

I think you can get creams for inverse P but on prescription. I haven't told my GP about it because I can't show them and without them seeing it there's no way to assess whether it's P or a fungal infection (my Dad has a similar sounding rash in the same place and was told his was fungal). Apparently inverse P can be easily mistaken for a fungal infection or can co-exist with a secondary fungal infection. So I will mention it to the Rheumy on Monday and let them judge if it's significant or not. It's not too bad, a bit uncomfortable at times and occasionally itches a little, aside from that it's just a shiny red rash.

Otherwise all I have P wise is my nails and I don't have a confirmed diagnosis of those as I've never seen a dermatologist for them.

Well, not long to wait now!

Sounds like your meds are having an effect already which is good news. When do you start your methotrexate?

Keeping my fingers crossed for you that they offer something to help on Monday.

I’m not sure when I’ll be starting the methotrexate.
The rheumy wrote the prescription but they took it and said it would be passed to the nurse who will give it to the hosp pharmacist after she has rang me.
I’m guessing it’s just a case of waiting for my blood tests and chest X-ray to be checked so thinking sometime next week hopefully.

Saw the Rheumy today.

She said my elbow swelling isn't where you would normally expect it to be with inflammatory arthritis, it looks more like the tendons. So she said she thinks there are 3 possiblities:

• it's a tendon issue caused by the Ehlers Danlos
• it's a tendon issue caused by psoriasis
• it's a combination of both

She said I had indications of inflammatory arthritis in my descriptions of the morning stiffness and stiffness after rest.

So next steps are more bloods (done today) and xrays of hands, wrists, feet and elbows and ultrasounds of hands, wrists and elbows. They will be done at a later date. She will diagnose me after the xrays and ultrasounds.

Rheumy said it sounds like my rash is P as are my nails. She said she thinks I have a propensity to psoriasis and to never sit on joint issues - always go to GP ASAP and Rheumatology will always want to assess me for PsA.

So no answers today but she is clearly taking it seriously which is good. Just need to wait for the ultrasounds and xrays and see what they show.

I forgot to say I have almost been crying with pain at it's worst but I answered all her questions and I guess the xrays and ultrasounds will reveal what's going on.

I expect I will have to wait a while, IME write ups from consultants to GPs and patients takes about a month and she may want to delay this until she has the xrays and ultrasound results. Main thing is that the ball is rolling and she's taking me seriously.

@IWishTheBishopWell

Saw the Rheumy today.

She said my elbow swelling isn't where you would normally expect it to be with inflammatory arthritis, it looks more like the tendons. So she said she thinks there are 3 possiblities:

• it's a tendon issue caused by the Ehlers Danlos
• it's a tendon issue caused by psoriasis
• it's a combination of both

She said I had indications of inflammatory arthritis in my descriptions of the morning stiffness and stiffness after rest.

So next steps are more bloods (done today) and xrays of hands, wrists, feet and elbows and ultrasounds of hands, wrists and elbows. They will be done at a later date. She will diagnose me after the xrays and ultrasounds.

Rheumy said it sounds like my rash is P as are my nails. She said she thinks I have a propensity to psoriasis and to never sit on joint issues - always go to GP ASAP and Rheumatology will always want to assess me for PsA.

So no answers today but she is clearly taking it seriously which is good. Just need to wait for the ultrasounds and xrays and see what they show.

I forgot to say I have almost been crying with pain at it's worst but I answered all her questions and I guess the xrays and ultrasounds will reveal what's going on.

I expect I will have to wait a while, IME write ups from consultants to GPs and patients takes about a month and she may want to delay this until she has the xrays and ultrasound results. Main thing is that the ball is rolling and she's taking me seriously.

How bizarre, tendon issues are classic PsA Symptoms

I'd be looking for a new rheumy if the one you've got doesn't understand the link between enthesitis and PsA .

I don't think I explained it very well @BoulangerieBabs - I forgot to say that she did say that PsA can affect the tendons and commonly in the elbow but she thinks it's more likely to be the EDS in my case. She said the xrays and ultrasounds should be informative and can help her advise the physio what the problem is so I can be given more tailored exercises. Thinking about it now I have had lots of tendon issues since 14/15 but never swelling with them before.

She seemed reasonably knowledgeable about P as she asked about any rash on scalp, belly button and between the buttocks. She did look but said she couldn't see the rash (it is quite narrow).

Of course, as is so often the case when I see a Rheumy, today is a good day, with no stiffness and less pain than normal when being poked and prodded

I'm glad she also said I should always be seen by Rheumatology in future with new joint symptoms/swelling due to propensity to psoriasis and I'm not wasting time. I've seen so many rheumy's over the last 10 years that I've had GP's refuse to refer me again in the past.

We also had an added complication that I have a very rare genetic skin condition so that caused a distraction as she (understandably) didn't know anything about it so had to ask me lots of questions about it in case that could be behind my dry eyes and causing my nail issues (not to my knowledge). So that took up quite a bit of time.

On the plus side she wasn't obsessed with fibro and blaming everything on that which is good as most doctors I see will blame all sorts on fibro.

I have physio tomorrow morning so will see what she thinks (she has said before that it sounds like PsA). So far my left elbow has been swollen since 3 Feb and hasn't gone down at all and my right elbow has been swollen since late May and hasn't gone down at all but not as swollen as the left one. Physio has helped with pain but hasn't done anything for the swelling.

All I have is co-codamol so as awful as it sounds I hope the ultrasounds show something so I can get some treatment (allergic to ibuprofen and naproxen and my GP says asthmatics can't take aspirin).

I've started prednisolone today. The nurse told me to take 5mgs a day. I'm on my period too so I'm really hoping I don't get mood changes.

Also the conversation she had with me was very bleak and has knocked me for six.