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.

So my bloods showed high ESR and CRP; both signs of inflammation. Though I seem to remember my consultant saying that they aren’t always as high is PsA vs rheumatoid arthritis. My x rays (hands) showed joint damage; now I think about it I also had a CT scan of my hands though I think that was after diagnosis to assess extent of damage.

I was lucky that I had private healthcare through work which helped speed up diagnosis and get me into treatment. I’ve since transferred back to NHS care but with the same consultant. Where are you based? If you are looking in London feel free to message me and I can let you know my consultant’s details to consider.

@AnnaMolly06 - hope your appointment comes soon. Has your GP suggested anything in the meantime to help like physio? Sounds like you're finding things tough

After initially rejecting my GP's referral Rheumatology have now agreed to see me after Physiotherapy supported my GP's referral and a few weeks ago I was given an appointment date for 16 November. It's face to face but I wouldn't be surprised if it became a video call if Covid flares up again in the winter.

When my referral was rejected I looked at going private - there's someone near me (London) who charges £175 for a private appointment. Let me know if you want details.

Physio has helped me loads. It hasn't reduced the swelling, my right elbow has become more swollen, it now almost completely matches the left. It has helped reduce the pain levels though and it has increased my stamina generally. I eased it off during the heatwave here with my therapist's agreement and the pain levels increased dramatically, especially at night. Now the temp has dropped from 36 to 24 I need to pick it back up properly!

My Imraldi arrived today. Can't use it for a couple of weeks as I've got a sore throat so the nurse is coming to show me how to inject week after next.

I'm very nervous, given the pandemic and the possible side-effects, but I can't go on using so many steroids, codeine etc etc. I'm surrounded by boxes of tablets, cartons of skin treatments ... it's incredibly demoralising.

I'll be continuing my (gentle!) physio, though, as some of the arthritis is osteo (apparently), though most is psoriatic.

@JamieLeeCurtains. Good luck with it! I take Hyrimoz - same drug, different brand. I found it made a life changing difference. Other than the self injecting which I’m not keen on I don’t experience other side effects and I noticed a difference within days of my first injections (tho realise it can take longer for others). It also made me realise how bad my symptoms had been when I could suddenly do things I hadn’t done for ages (like stand up from the floor without having to hold anything)

[quote macaronip1e]@JamieLeeCurtains. Good luck with it! I take Hyrimoz - same drug, different brand. I found it made a life changing difference. Other than the self injecting which I’m not keen on I don’t experience other side effects and I noticed a difference within days of my first injections (tho realise it can take longer for others). It also made me realise how bad my symptoms had been when I could suddenly do things I hadn’t done for ages (like stand up from the floor without having to hold anything)[/quote]
Thanks for the positive message, @macaronip1e

Did you / do you also have related fatigue, and has it helped at all? I'd love to be able to feel 'normal' again.

@JamieLeeCurtains. I def have more energy - though I’m not sure if that’s the adalimumab or not being on methotrexate (which left me wiped out and I stopped taking at the same time as starting injections). I still have some days where I feel sluggish, but on the whole I feel “normal“ and have days where I don’t notice my condition at all

Well, fingers crossed.

I'm so glad it worked for you, macaronip

Good luck with the Imraldi Jamie, I hope it helps and that you're over your sore throat soon.

I am counting down the weeks until my Rheumy appt in November as I'm fed up with managing my symptoms with co-codamol only.

In the last few days my lower back/hips have been stiff and sore and so have my hands/fingers. I have pains in some of my top finger knuckles but no swelling. I also have a very itchy scalp, especially around the hairline by my neck but DH says it looks normal - no redness or flaking.

On top of that I continue to have achilles and heel pains and my left heel, which is the worst one, went hot and tomato coloured the other day. I am finding myself very stiff when going from a sitting to a standing position which isn't what I thought being 32 would feel like!

@IWishTheBishopWell Thank you.

I was actually prescribed the Imraldi by Dermatology after a massive skin explosion from (possibly) taking the Sulfasalazine prescribed by Rheumy. Lucky me, eh, having psoriasis! Dermatology are very aware of the arthritis, though, and hopeful it'll help both.

Would you consider Zapain? It's a lot stronger than co-codamol. Although obviously not ideal long-term.

@JamieLeeCurtains - crikey, it's Zapain that I'm on and I've been on them since 2014 when my GP insisted on taking me off Tramacet for chronic pain and gave me Zapain instead

Might be time to have a word with my GP!

How many are you taking a day, though, @IWishTheBishopWell?

And I wouldn't open a can of worms necessarily with the GP over pain relief till you've seen the Rheumatologist tbh. You don't want them swapping out Zapain for Prozac at this stage, which is what is happening in some practices. (Unless you want that.)

For my lower back and hip pain, I genuinely have had benefit from some very gentle 'bed physio' like pelvic tilts.

But my fingers and toes ... yup, Zapain. Absolute bummer, isn't it, the whole damn complicated thing?

... when I say 'Prozac' I mean SSRI anti-depressants in general

@JamieLeeCurtains - I can take up to 8 Zapain tablets a day. 99.9% of the time I take 2 tablets every morning.

If I'm in can't function have to stay in bed levels of pain I take a 3rd tablet - this usually happens about 5 times a year. I find two tablets a day doesn't give me too many side effects and reduces my pain to a point I can cope with.

However since May I'm having more bad days, presumably because of whatever new thing is going on, or if it is the existing conditions, a bad flare.

Sorry to hear your P is bad, hope the Imraldi helps your skin and arthritis DH has skin psoriasis whereas I just have it in the nails, assuming nails aren't pitting and detaching for another reason!

I will ask my Physio for some gentle back exercises, I had hip physio a year ago which was awful and I had to stop as I had to work from home for several days after each session. This physiotherapist is better though, she gets EDS better and suggests better gentle exercises I can actually manage

Hello again! I had my loading dose of Imraldi yesterday (x2 injections) and feel a bit wiped out. I had yesterday off, but I really need to get off MN start writing a report today.

Also I'm now stuck in for a few weeks waiting for the new 'shielding' advice at the nurse's request - except that I'm having a minor op on Thursday the crap timing of which is down to my consultant. The nurse was at that news.

I hope you don't have to shield Jamie and that your Op goes well.

My mother and MIL have both had two surgeries each during lockdown. The hospitals have managed it all really well - negative Covid tests were needed for the operations to go ahead and temperatures taken before all face to face appointments. They were both anxious beforehand but felt very safe once there.

I am having another flare, my left heel has been horribly painful and I am very stiff and feel tired and generally eurgh. Have been like this the last week.

I am hoping my Rheumy appointment doesn't get cancelled/postponed now that Covid is worsening but also trying to mentally prepare myself for that possibility.

Hi @IWishTheBishopWell. Thank you.

My Rheumatology Dept has just written to us all asking for people to express an interest in moving to phone appointments with their consultants. I think the writing's on the wall ...

My toes are really sore and I have very little energy today. I need a I guess I have few weeks to wait for my miracle bounce, if it happens.

Tomorrow's op should be done under a local. Cringe.

Hope you've got plenty of zapain on standby.

How are you getting on after the operation @JamieLeeCurtains? Hope all went well and that you're recovering well

All good so far, just a few stitches to come out in about ten days. Wound still clean and dry, but I'm a bit worried about infections. I don't know how long the path lab results take to come back?

Hi. I'm still around, still waiting.

My gp has put me on Etoricoxib which seems to be working better than the naproxen.

Spoke to gp and hosp appointments team again yesterday. I have to have a face to face appointment so the wait is going to be longer as they're only doing a few a week.

In laws have offered to pay for a private appointment which I said no to initially but if it comes up in conversation again I might have to take their offer.

I hope everyone is doing as well as they can be.

Glad the op went well Jamie.

I'm surprised you don't have an appointment date yet Anna - it sounds like we were referred at a similar time. Must vary a lot by location (I'm in London).

I would be tempted by the private appointment. You'd have to ask if the costs of xrays, bloods and ultrasounds etc. are included in the appointment cost. If you have very visible swelling and tell tale PsA signs (like dactylitis) then a reasonably firm diagnosis may be possible from sight without xrays etc. and at least you'd know whilst you waited for an NHS appointment. Sometimes you can see an NHS Dr privately initially and then be transferred to their NHS list I think?

As a bit of an aside, does anyone know if all types of psoriasis count as psoriasis with arthritis symptoms, or just plaque psoriasis? I ask as I have a small red rash in my belly button but it's not scaly and I wondered if it might be flexural psoriasis. Most info on psoriatic arthritis only talks about plaque psoriasis.

I've booked a private appointment, my in laws came round again today and told me I wasn't allowed to say no.
I'm so grateful but still worried that I'm taking so much money from them.

I won't be able to pay for any actual tests so I'm hoping, like you say, the physical signs and also my history will be enough for the consultant to at least make a probable diagnosis.

I have obvious nail psoriasis in my finger and toenails but my actual patches of skin psoriasis come and go.
Unfortunately, the biggest patch I've had for the longest on my knee has cleared up in the last week or so but I do have a small patch beginning on my foot. I also have obvious toe swelling, even when not swollen you can tell it has been as the 2 are always red and inflamed.

I don't know about different types of psoriasis unfortunately as like I said I've only ever really had small patches apart from in my ears and on my scalp. Hopefully a pp will come along who knows more.

Hello again @AnnaMolly06, and hello again @IWishTheBishopWell.

Just reading your posts now.

I'm glad you have an appointment booked Anna - very kind of your inlaws. You sound like your symptoms are more visible (than mine at least) so hopefully that will help the Rheumatologist. Do you have long to wait?

My appointment is about 3 weeks away so still a wait but I'm sure as I can be that I will be waiting longer for the nhs one. Weirdly, it's nice to know I've finally got something in place to maybe get some answers.
The rheumy I'm seeing is the consultant rheumatologist at the hospital I've been referred to as well so hopefully he will transfer me to his books if necessary.

Just a disclaimer, I'm not complaining as such about the wait on the nhs. I understand and completely respect how difficult things are at the moment, as frustrating as it is, I know it can't be helped.

Do anyone else's symptoms move around?

I'm getting frustrated not knowing what's going to hurt on what day......which knee, if my elbow is going to be sore, if my feet are going to hurt that day etc. It's like a really crap game of bingo when I wake up every morning.

I have PsA. Diagnosed at 23 and was almost house bound with it. 29 now and actually only mildly affected. This disease is a bitch.