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.

OP, I have read that there have been positive studies on reducing monocytes through intermittent fasting and the resulting autophagy (cell renewal/repair which ramps up after around 20 ). Studies are out there showing that human growth hormone (HGH) is released in higher levels too. Some of these studies have only been on mice, but there's a lot of anecdotal evidence on intermittent fasting Facebook groups.
Worth researching and trying for a couple of months I should think. It's very easy to do and has other health benefits. It also makes it easier to notice if any particular foods or drinks trigger flare ups.

@DianaT1969
I've looked into diet changes quite a bit but I have always struggled with low weight so am reluctant to make any changes that could risk me becoming under weight again.

Thank you for the advice though

Hi OP, I'm a bit late to this.

I've been dealing with it for 20+ years.

There is lots available, physio, hydrotherapy, various drugs.

It can take time to get the right mix for you, and then that can change. Split things down.

1. disease modifying drugs - these get the disease to stop spreading, I was on methotrexate for 10 years and eventually couldn't stand the side effects any more, your GP might not want to prescribe one and will leave that for the rheumatologist.

2. Pain relief, these can be drugs, a tens machine, hot water bottle, cold compress - you will find what works for you.

3. Anti inflammatory, usually drugs but ice or cold compress can also work

4. Preserving movement of joints, this is where physios come in and it is well worth following their advice and doing daily exercises. It sounds counterintuitive but I found learning British Sign Language helped with my hands.

One piece of advice I will give is don't be scared of 'equipment' I put off having a walking stick for ages but it actually helped, I didn't fall as much and I could walk further.

Oh I’m pleased you’ve got an appointment sorted. Hope it gets treatment and support moving along quickly.

As a bit of an aside, does anyone know if all types of psoriasis count as psoriasis with arthritis symptoms, or just plaque psoriasis?

@IWishTheBishopWell, I always thought it was all types, given that some people only have involvement with their nails and also have PsA - but looking at my Imraldi (Adalimumab) literature, it only seems to mention plaque psoriasis.

I'm now not coping with the Imraldi very well; I've been wiped out by that 3rd injection. I had to finish a final draft of a report yesterday for a client, and really struggled.

I feel worse now, and my skin isn't good at all. I can't really see the point of making myself ECV for this, and the risks, tbh :(

@JamieLeeCurtains I'm sorry you're struggling.....can you contact your rheumy or gp see if they can offer anything to help?

I hope you're feeling a bit better this morning

Thanks, @AnnaMolly06. Yes, there's a patient line I can ring.

@JamieLeeCurtains - sorry to hear you're struggling is Imraldi one of those slow acting drugs that you have to take for a long time before it works? If not it may be worth asking your Rheumy for a switch to something else?

Thanks for the info on the leaflet. I'm fairly sure I read somewhere that you can have PsA and 'just' psoriatic nail disease but I guess it's hard to say nail issues are psoriasis in the absence of skin psoriasis. I definitely had something which looked like a plaque of P in 2014 when I moved house - DH has plaque psoriasis and it looked just like his patches. I couldn't show a GP as I was in between surgeries and it took 6 weeks to get an appointment with my new GP after a 4 week wait to be allowed to book an appointment after registering. So by the time I saw a GP it had gone. I'm kicking myself for not taking a photo. I didn't because it was in my groin and I didn't want a pic of that area on my phone in case anyone saw it. With hindsight I should have used a tissue to hide the bits I didn't want in the photo.

I have a weird patch of skin on my ankle. It's been there since the 6th form. It's flat and red most of the time and looks a little dry and flaky at times. Every so often it develops a thick cluster of dry skin flakes on it but my GP thinks it's an allergy, same with a similar patch on my outer elbow and a red sore flakey patch I get on my scalp sometimes which is uber itchy and causes hair loss. No idea what I'm allergic to though so have no way of stopping them from reoccurring!

@AnnaMolly06 - 3 weeks is good news, not long to wait fingers crossed you will have a better idea of what is going on after it.

@AnnaMolly06

How are you getting on?

I think we're on roughly the same journey.

I've had psoriasis all my life. Particularly badly as a child, which wasn't treated properly. I used to have huge patches of it on my scalp. Since then, I've only had the occasional flare up.

I've had back pain since pregnancy, I've had dreadful pain in my shin and in my elbows, both of which I thought were exercise related. I developed asthma and hay fever out of the blue in 2016. I've also had iritis a few years ago and have been unable to wear contact lenses since.

I started noticing I was dropping things a lot around this time last year. I thought I was just clumsy. Or rather, I convinced myself I was just clumsy although I know osteoarthritis runs in my family.

I finally ended up taking the skin off my leg dropping boiling water down myself and realised I needed to see the GP.

I then developed excruciating toothache like pain in my fingers in January. I also broke a finger and badly damaged another in an accident and was let go from a job where I was still in probation, likely because they knew I was developing arthritis and it took a long time for the pain to be bearable enough to work.

I saw the consultant in February after spending a month in bed with a hot water bottle. She prescribed me Celecoxib. Along with co-codamol, I managed well enough to get another job which I've managed to keep. So far.

Recently, I had a terrible flare up in one finger where it went bright red and swollen like a sausage. And the pain came back. I now struggle enormously to type, to drive, because I can't grip the steering wheel, and even to open a jar.

My consultant put me on methotrexate, which has made me horrendously ill. I've also been given prednisolone, but I'm terrified of taking it, although I will have to if the pain continues.

I have had a recent sun bed session as I saw such little light over the summer due to Covid and working from home. I did notice a lot of relief from that straight away. I've ordered a UVB lamp so that I can try it at home because I know the sunbed isn't the best solution, but I'm desperate.

I take every vitamin under the sun that I can think of. Vitamin D especially. Two types of joint support tablets. I've even just got some retinol and hemp cream to rub into my hands in case that works. I've also got anaesthetic cream which helps when my hands are itchy. And diclofenac gel, although I can only apply it topically. I've had a stomach ulcer before so all NSAIDs apart from Celecoxib are out.

I'm very scared of becoming even more unwell. I feel exhausted all the time. I try and keep up with yoga classes, but I struggle because I can't take any weight on my arms. I used to be very strong before this and could plank and do arm balances with no problems.

Anyway, hope that wasn't too long to read. How did you get on at your appointment?

I hope your appointment went ahead @AnnaMolly06 and that you now have some idea of what is going on

Hi. Sorry for the delayed reply.....again

My appointment is tomorrow, I’m starting to get nervous now.
I’ve got so much to fit into a 30 minute appointment, I’m worried I’m going to forget something.

I have the referral letter from my gp that contains my medical history but I’m going to write a (long) list of my symptoms and what questions I feel I should be asking.

It sounds weird but I got quite excited yesterday when I spotted a new patch of psoriasis as it means I’ll actually have a physical patch to show him rather than just a pic on my phone.

Health wise recently, I’m pretty much the same unfortunately.
I’m still struggling to stand for long enough to cook a decent meal and if I push myself to do it like I did this weekend I’m so sore and stiff the next day that even getting dressed is a battle, that along with swollen toes, sore feet/ heels, one sore, stiff finger and elbow, I’m now pretty much only just coping and putting all my faith in this doctor being able to help in some way.
Sorry for the self pity, it is sort of therapeutic being able to get it all out though.

How is everyone doing else doing?

@TheBlueStocking I’m sorry you’re having to deal with this too How are you feeling?

Good luck today AnnaMolly, hope it goes well. Let us know how you get on.

Not strange about the new psoriasis patch, I was pleased to find new pits in my nails a few weeks ago for the same reason!

So. I officially have a Psa diagnosis.

I honestly couldn’t have asked for a better outcome.

The consultant is re submitting my nhs referral as urgent with instructions for which joints need x raying and where I need steroid injections with a look to start methotrexate asap.

He said I should have an appointment within the next 2-3 weeks and apologised for how long I’ve had to wait already.

I cried out of relief more than anything I think.

That's really good that you have a diagnosis. I know what you mean about being happy to have some evidence.

Things have not been great for me. Methotrexate made me really unwell. I haven't been out of bed since I took it.

I spoke to someone from 111 about it and they said they should have weaned me on rather than making 10mgs the first dose. Have they asked you to wean on or just start at the full dose?

I have some steroids too, but I can't take them at the moment because I'm so unwell. I've been in the hospital twice with abdominal pain and been on the phone to 111/GP pretty much every day. It's a really intense drug.

However, I have had loads of stomach problems in the past, so you could be ok. I've had an ulcer and pancreatitis before so I don't think it's suitable for me because my stomach is just too delicate.

I've got another consultation in a few weeks so I'm going to see what they say then. I also spoke to the rheumatology nurse who said methotrexate injections could be an option.

Sorry to hear it definitely is PsA OP but at least you will soon have your treatment underway.

I'm very glad that you got an answer so quickly though and your Rheumy sounds very on the ball - good that he's getting you sorted on the NHS asap.

Going private was definitely a good move, your inlaws sound wonderful

Hello all. I'm the one on the Imraldi injections (biologic immune-suppressant). I have psoriasis, arthritis, synovitis, various other auto-immune conditions, and fatigue.

Except I've had to stop after only a month. I'm so unwell right now I'm not properly functioning, and I have to have another load of blood tests. My white blood cell count is too low.

My skin cleared up though. But no change to joint pain, and in fact the inflammation and fatigue got worse. And now I seem to have a viral infection.

These drugs are not really a panacea, are they?

Do you mind if I ask how it's made you feel in terms of being unwell? Is it stomach related?

I'm really worried about the immune suppression element of treatment.

I've got my UVB lamp now if anyone would like to know if it makes any difference? I've done two treatments so far. It doesn't take very long as apparently you don't need much exposure.

I've currently got one finger that I can't move at all. I've bought some tools to help with opening lids and cans. It's all quite overwhelming how serious this is

Hi OP - that’s good news that you have now been officially diagnosed with psa as it means that you can now start treatment and hopefully get your life back, or at least that’s how I felt when I was diagnosed with RA last month.

I so far have been pretty lucky on the Methotrexate, the only thing I didn’t account for was how tired it would make me feel for a few days, but I’m hoping that this will eventually get easier. So make sure you start it maybe on a Friday night if you work, so that you have the weekend to rest and recoup.

I hope that you start to feel better soon.

@TheBlueStocking, since starting the Imraldi I've felt even more wiped out than usual, very nauseous, and achey. Awful IBS-type symptoms. Inflamed knees.

I went to GP surgery on Monday morning, and was in a sorry state. Dizzy, tachycardic, low BP. The duty team were bloody marvellous and did blood tests which ruled out blood clots (I'd had them before, so that's a 'routine' test for me) but which did show low white blood cell count.

Repeat on Monday.

My skin is clear, though!

Thank you. That sounds awful for you!

I had very low blood pressure too, in the hospital the other night. They had to give me two IV bags of fluid to get it up to an acceptable level.

It's rough, eh?

Good news about your skin though!

@TheBlueStocking

Good news about your skin though!

I can't even go out and twirl around showing it off