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.

How are you finding prednisolone Blue Stocking? Hope it's not too bad.

Although I didn't like the drug when I was on it I was very aware that it was the drug talking which made it easier to deal with. So I knew I would feel better once my 6 day course was over. It also eased over time as I took 30mg the first day, then 25mg, then 20mg and so on until I wasn't on them any more. By the time I was on 15mg a day the side effects were easing.

I have had a letter for my xrays a week on Monday. I need to ring up and see if they can be done at the satellite hospital in walking distance of my house (part of the wider hospital and it offers ultrasounds, xrays, bloods, ante natal services etc.) as the main hospital is a 30 min drive away.

I spoke to the physio this week and she wants to see my xrays and ultrasound images once they've been done to help her tailor my exercises.

Just realised my xrays are only for my hands and feet and not my elbows so maybe those will be another day. I'm sure the Rheumy said she wanted xrays of hands, feet and elbows and ultrasounds of hands, wrists and elbows. I'll have to ask about the elbow xrays.

It feels like a lot of life admin!

I've got some ultrasounds coming up on the 27th too.

I've been finding the prednisolone good in some ways. Actually managed to open a can of coke unassisted for the first time in months. That sounds little, but it meant a lot to me.

Otherwise, I've been feeling very unsettled. Very thirsty. I was hallucinating a bit last night. Couldn't see properly and was fractious and crying easily.

I also seem to get my elbows left out too. Still haven't had ultrasounds on them. Was supposed to be getting physio too but haven't had any.

I'm also really struggling with the second lockdown because I can't go on the sunbed and that's the only thing that really keeps the pain away and my mood up. I've got my UVB lamp but I've been too out of it to use it.

Also called in sick today from work.

I'm wondering if I need counselling to come to terms with this.

Blue Stocking

How're you finding the prednisolone now? Unsettled is a good word to describe how it feels. I'm glad it is having a positive impact on your joints

I had counselling 9 years ago due to another condition on GP advice. It really helped me so I would definitely recommend it.

I have now booked my hand and feet xrays for Monday afternoon at my local satellite hospital in walking distance which is good as it saves DH having to drive me and hang around. The hospital said I've only referred for ultrasounds of my elbows so I must have misheard the Rheumy. Apparently the ultrasounds have a longer wait which is annoying as if I had elbow x-rays first it might give some indications as to what is going on!

Just had an appointment letter for my ultrasounds (hands and elbows). They are taking place at my local hospital on Sunday 27 December. Strange date!

So hopefully I will know what's going on with me in the New Year.

I just had a diagnosis this morning !
Starting with joint pain in dip joints !
Back and forward talking to G.P on phone kept telling me to take naproxen then co codomol in the end I pushed for rhumatology because pills only masking it and not really me an explanation to why my fingers hurt so bad !
Anyway rhumatology rang telephone appointment asked me symptoms ect I also have patch in scalp toenails changes and pain on the bottom of my foot .
Had xrays which showed osteoarthritis in thumb and wrists joints
MRI scan showed inflammation in dip joints and tendons
Rhumatology telephone app this morning and he said he’s very sure I have psoriatic arthritis and I have to see him in the next few weeks for steroid injections and chat about future medications. So it stayed in April and diagnosed today I don’t think that’s too bad tbh specially during covid pandemic!

Hi all, I hope everyone is coping ok and managing with Xmas planning.

I finally started methotrexate last weekend and thankfully didn’t suffer too badly with the side effects.
I’m on my last week of a tapering dose of prednisolone and can already feel it wearing off, the burning in my heels is back and my knees are stiff and painful but hoping the methotrexate will work and take over the job the steroids have been doing 🤞

A quick question though, I had all my bloods done before starting methotrexate and I had a phone call today from the nurses saying that my consultant has requested that I have a blood test to check for coeliac disease. Has anyone else had to have this test? Wondering if it’s standard or if maybe something in the bloods I had done previously has triggered the request.

@AnnaMolly06
I think the condition also connected to other Autoimmune problems and ibd is one of them x

Anna - I think coeliac disease is quite commonly co-morbid with other autoimmune diseases like inflammatory arthritis so they're probably checking to be thorough. The first Rheumy I saw 10 years ago tested me for everything - hepatitis, STDs, all sorts. I even had a liver scan.

I'm glad you've not suffered too much with side effects from the MTX and hopefully it will help

Rheumy has discharged me back to my GP's care with a diagnosis of golfer's elbow, possible psoriasis and some inflammatory features in my joints. Treatment to be a continuation of physio due to my allergy to anti inflammatory drugs. She says they'll keep me under review if my xrays, bloods or ultrasounds show anything rheumatological.

The xrays took place two weeks ago (hands, feet and elbows) and my ultrasounds are at the end of the month. So a little longer to wait to see if I will go back to Rheumy or whether I will remain under my GP's care.

Can anyone help? I’ve been diagnosed with psoriasis since I was 3 ( now 50) Psoriasis not too bad recently, scalp and ears bad but only 3 other patches across my body, been like this for a while
I have been having joint pain, ankles, toes, knees, hips for a number of years, all been put down to meno.
This has gradually Been getting worse, I walk like a penguin when I first get out of bed my ankles are so stiff.
I have had bloods done, including rheumatoid factor, and I’m due to get my results tomorrow. I think my rheumatoid will come back ok, I’ve read this quite common with PA.
How should I handle this with the nurse practitioner when I speak to her tomorrow?
I’d be really grateful for any advice.

@iamme21
Hi I would insist on being referred all my blood tests came back normal !
The actual rhumatology consultant asked me questions about my periods ect and said it could be down to hormones, it was only when the MRI results came back that he can now see my finger joints are inflamed and joints have damage !
I have suspected my skin problems have been due to psoriasis for a while and it all ties in now and I’m due to have steroid injections tomorrow and a chat about long term medication you have to push if u have psoriasis and then develope joint pain it’s more than likely you have psoriatic arthritis xxx

@Hairobsessed123 Thanks for this. I did think I might have to push for a referral, was just a bit worried about the current NHS situation!

@iamme21
I do understand your concerns but if u don’t get it treated it can often damage joints and you can’t fix them !
If your in pain it needs to be sorted !
Mine started in April and I had all tests xrays and MRI scan throu pandemic and diagnosis don’t put it off xx

@iamme21 - I would ask for a referral to Rheumatology and make sure you flag to your GP that you have psoriasis. People with psoriasis should be offered an annual check for PSA (usually in the form of a questionnaire to fill in). I suspect this doesn't happen often in practice - DH has had psoriasis since a strep throat infection as a child and has never had one. However, when he developed some joint issues and told the GP 'I have swollen fingers and also I have psoriasis' the GP moved quickly. I think GP's are meant to refer anyone with psoriasis and joint swelling to Rheumatology.

I saw Rheumatology in November and although anxious re: Covid it was fine. Lots of measures were in place, people kept apart in waiting room, everyone wearing masks and the Rheumy was 2m away at all times, bar the physical examination when she donned extra PPE. So I did feel safe.

In my area at the moment only tests requested by specialists are being carried out due to Covid. So, all being well, I will have ultrasounds requested by Rheumy later this month. I have a shoulder issue which has flared up for the 3rd time recently to the point that sometimes I can't dress or undress myself and my GP wants me to have a scan but she can't request one atm. My Rheumy could, however. So if your area is like mine, the sooner you are referred the better so you can have xrays etc.

@IWishTheBishopWell Thanks for your reply. I spoke to the practice nurse this morning, my rheumatoid factor has come back negative. My folic acid is low, so getting treatment for that. Some other results haven’t come back yet, nurse will ring me when she has them. I mentioned rheumatoid being negative in PA- she has said she will contact rheumatology when all my results are back ands ask if I should be referred.
Hopefully will know a bit more in the next couple of weeks- and at least they’ve picked up the folate deficiency.

If your GP practice has an online service you can usually log in (once approved by your GP) and gain access to all your blood tests/consultant /referral letters which is helpful when undertaking further self research.

Anyone know if those with psoriatic arthritis on methotrexate would be classed as clinically vulnerable or clinically extremely vulnerable? And who would decide this? Rheumatology?

@FigDate

Anyone know if those with psoriatic arthritis on methotrexate would be classed as clinically vulnerable or clinically extremely vulnerable? And who would decide this? Rheumatology?

Only moderate risk by themselves.

I'm on Cosentyx with additional steroid pulses from time to time - apparently, for 14 days after a steroid shot, you're supposed to isolate, but in general, it's not enough to count as CEV.

@NeverDropYourMoonCup
I had a steroid shot a week today and wasn’t told to isolate 😱

@NeverDropYourMoonCup
I have stayed home just been to do food shop and that’s it thou ! X

[quote Hairobsessed123]@NeverDropYourMoonCup
I have stayed home just been to do food shop and that’s it thou ! X[/quote]
Might be my job that contributed towards it, but they made a point of telling me, the GP and providing a note for work if I needed it; fortunately for me, work closed the following day, so I'm wfh instead. But if it weren't for DP, I'd be getting food from the supermarket as well.

How is everyone doing?

I now have my ultrasounds booked in for the week after next. I'm really pleased as I want to know what's going on - I've not had results of xrays and bloods from November yet (presumably due to lack of ultrasound results) so have no idea whether the bloods and xrays showed anything or not.

@IWishTheBishopWell
That’s good you may get some answers soon then !
I’m ok had my steroid injection which lasted all of 5 weeks and just had another blood test Friday just waiting for rhumatology nurse to ring me in the next week or so and I guess I’ll hear if I have to go on medication! Also had my covid vaccination 💉 Friday so I’m feeling happier ! And weirdly enough I’ve been pain free this weekend ! X

I've had a bad week with a lot of pain in some of my DIP joints, especially on my left hand. I've been finding typing at work painful and difficult.

I had my ultrasounds today. I think this is the 3rd or 4th scan of my hands over the last 11 years (last one was 5 years ago). They have all been normal until today when the sonographer found 'severe inflammation' in the finger joints which have hurt on my left hand over the last few days.

My elbows didn't show any active inflammation which surprised me as the left one has been swollen for 13 months and the right one for 10 months.

Sonographer said to give Rheumatology a week to contact me and to then chase them up if they haven't been in touch to discuss my results.

So not sure what the inflammation points towards condition wise, whether it's just in the DIP joints or if it's also in any of the other finger joints. However, it looks like I will have some answers soon.

Hi all,
My DH has just started Humira and is very overweight. Dosnt drink thou. His liver readings have been raising since last two tests... any ideas.

He has had P since 8yrs and PA for last 12yrs. He started having uveitis so they changed to Humira last year.
If Humira dosnt work( because of liver rosk)..do we have any options at all?!. I am scared for him developing all sorts of things from PA. He is always the 'lucky' one to be in the smallest of percentages of people developing dangerous problems .

P since he was 8yrs. PA started when he was 32.