PsA diagnosis today

[florenceandthemac]

Ten months after first going to the GP wondering if I possibly had psoriatic arthritis, followed by several months of going round the houses with numerous private consultants for all the disjointed symptoms, a fibromyalgia diagnosis from the rheumatologist but being sent for scans and bloods to 'rule out PsA', I've today been diagnosed with it.
I'm being referred to an NHS rheumatologist now I have a diagnosis.
I appreciate for some people it can take several years for a diagnosis, but it's still been a very frustrating time being passed from pillar to post to eventually be told I was right...
I'm not sure how I feel today. A bit meh (hate that word). Wondering if anyone can help me to articulate how I feel, as I keep being asked by friends and family but it can't put it into words.
I'm not necessarily happy, not relieved. I'm glad I'm can now tell people I'm not a hypochondriac. I'm glad I can now be treated to avoid it progressing, which was my biggest worry I guess

I'm not sure I can articulate how you feel, but I can tell you I'm in the same boat (I was diagnosed on Tuesday), and tell you how I'm feeling. I have very mixed emotions - I'm pleased to have a diagnosis, and my consultant is very reassuring, but it's daunting to be in my early 30s and know that this is going to be something that's with me for the rest of my life.
I'm very pleased that you have a diagnosis, which is half the battle. I think I've probably had low level symptoms for a few years but was always told it was RSI!
What is your treatment plan, if you don't mind me asking? I've been prescribed etoricoxib to see if that can manage symptoms as mine are quite mild comparatively, but that's being reviewed in January and I might be given sulfasalazine if I need something more.

@Waltzer91 was your consultant quite optimistic about achieving a good quality of life for you?

@Wupity Yes! Very much so. It's mild at the moment but he said for some people it never progresses beyond that, but if it does then I've got a diagnosis and a treatment plan. He was definitely optimistic (even if I'm not quite there yet - I just want to be able to get down the stairs in the morning).

I read somewhere that going on the online forums can be really scary when first diagnosed as the worst affected patients tend to be most likely to be there. I am hopeful that there are many many diagnosed who are easily treated.

@Wupity completely agree with this, I was only actually thinking about it this morning.
I'm on a PsA group on Facebook, and there is literally post after post about how bad the disease is and how everybody is struggling. Yet on here, when you search for PsA posts, everyone talks about how they lead a normal life 🤷🏻‍♀️

@Waltzer91 I don't have a treatment plan yet. I was diagnosed by a private rheumatologist, who will now right to my GP and I'll be referred to an NHS rheumatologist, so I'm dreading that wait.

Can I ask what your symptoms were that prompted you to first seek help?

I do think the online help groups are good. They provide so much support for those that are struggling and you get good tips etc. but of course anyone who has their disease under control are less likely to seek help online

@florenceandthemac Hopefully you get seen soon. Has the rheumatologist been able to prescribe you any pain relief or anything for whilst you wait?
For about 10 months, I'd been waking up with very stiff feet and ankles, particularly round my Achilles. I ignored it and thought I was just getting old (I know how ridiculous this sounds now!) We moved house into somewhere with stairs, having lived in a flat, and getting down them first thing in the morning was very difficult. We'd also been on holiday, and done a 15km hike that everyone said was easy. By the end, I could barely walk as my feet had swollen so much, so I went to a physio assuming it was injury related. The pain and stiffness had also started happening very mildly in my fingers and wrists at that point.
Within two sessions the physio had told me to go to the GP as she suspected rheumatoid arthritis (I have a family history of it). I saw a private GP - thank god for employers who provide private insurance - who referred me to the rheumatologist. He pretty much immediately diagnosed PsA and psoriasis, which I also didn't know I had, but my husband has since said he always knew I had psoriasis on my scalp and thought I knew 😂
From what I've read it sounds like everyone can experience things very differently - do you mind sharing your symptoms?
@Wupity totally agree - some of the forums are terrifying and also have made me feel that I'm complaining about nothing because my symptoms are comparatively mild. At least people on here seem pretty normal about it 😂🤞

Sorry to hear about the recent diagnoses. It can be a lot to take in. I was diagnosed when I was 30 but had first shown symptoms about 10 years before that. Getting a quick diagnosis and treatment is really key. My PsA is under control but the damage that occurred during my 20s before I was properly treated is permanent (albeit is more annoying than anything else). I know lots of people who have PsA and live an entirely normal life - as I do. Happy to answer any questions if it helps at all.

@Waltzer91 no she didn't prescribe any, but to be honest my pain isn't that bad. Feel like a bit of a fraud really when I read all the posts about how bad people are.

I started with severe dry eye in 2020, some days it was agony to move my eyeballs. I also had lower back pain throughout the last couple of years.
In 2022 I started suffering from my nails lifting, and then over the course of the last 18 months o have lost three complete fingernails.
Obviously didn't relate any of this, but after I realised I had nail psoriasis, I was doing some reading and read about it being an early symptom of PsA. I then felt like I could tick many of the symptoms off.
Over the last 10 months I've started to suffer from various joint pains, but it moves about. It seems all my joints hurt at some point, it's not horrendous pain and there's no swelling, and like you I put it all down to old age until people (older than me) said it's not normal.

Like I said there is no obvious swelling or inflammation, but it was picked up in the distal joints on the ultrasound. It's obviously mild and not showing in many places yet but I can definitely feel it, sometimes a lot worse than other times.

I do lots of exercise, strength training, running and hiking/mountain climbing. Luckily I'm fine whilst exercising, it's being still that causes me issues. However I have now started to notice it affecting my running ☹️

DH has had 2 bad flare ups over the last 15 or so years but both times was able to come off methotrexate eventually.

It seems to take him longer to bounce back after a cold/Covid but he benefits from exercising still.

@RandomMess is methotrexate just something he takes during flares?

Yes the first time was about 9 months the second time a decade later was more like 3/4 years.

He has a good friend who tried everything else but is now on biologicals and it's been life changing.

I can empathise with the meh feeling - I was diagnosed with rheumatoid arthritis earlier this year after a lot of back and forth for the last 21 months and while it's reassuring to know there's a reason for the pain and swelling and it's just not all in my head, it's not exactly a relief - getting my head around the fact that this is a lifelong thing that will be a case of management and not cure, for the next however many years (I'm mid thirties) is a real challenge. I'm not there yet. I've started a course of treatment, which has now been doubled, but it's not made a massive improvement and I'm awaiting the 6 month review by the consultant which should be taking place any time in the next few weeks although I've not had an appointment through yet so probably won't. I spent my early thirties in pain and feeling dismissed at every turn so I suppose the diagnosis is an improvement as it allows for a treatment plan.