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Psoriatic arthritis- advice needed

10 replies

creaky123 · 21/12/2022 08:30

Hi all, I'd be really grateful for any advice or wisdom. I've just been diagnosed with psoriatic arthritis. I've been trying to get help from my GP for a couple of years (very painful and swollen joints, exhaustion, plaque psoriasis and nail issues) and eventually got a non-urgent referral to rheumatology but the waiting list is so long I haven't even got an appointment date yet. In the end I paid to see a private rheumatologist who diagnosed psoriatic arthritis.

I'm not really sure what to do next. I need a scan of my spine as the rheumatologist thinks the arthritis has caused damage and to start DMARDs or biologics. It was a struggle to afford the private appointment so I'll need to wait for my NHS appointment, but that could be months.

My GP prescribed etoricoxib before I was diagnosed and that is fantastic for preventing pain in between flare ups, but it doesn't provide adequate relief when my joints are bad. At the moment, they're absolutely terrible and I'm struggling to do things like grip the steering wheel and pick up my toddler. The knuckle pain makes it hard to get to sleep and I'm waking up far too early with the pain.

The rheumatologist also recommended getting more active and I'll be taking his advice- I have some back exercises that he gave me which I've started. I'm anxious about exercising because it often triggers a flare up, so I'd be really grateful if anyone could recommend an activity less likely to irritate things.

I'm wondering whether I should contact my GP again and see if there's anything more they can do for this flare. I don't know whether I now need a more urgent NHS referral- I wish I'd asked the consultant now! I don't want to be a pain in the arse over it as I know the GP is under a lot of strain but I'm concerned that my joints could become more damaged and am generally finding things pretty unbearable.

Thanks!

OP posts:
creaky123 · 21/12/2022 08:34

Sorry should have added- I know the rheumatologist will write to my GP but I have no idea how long that will take or what will happen after that so not sure if this is something I need to be proactive about.

OP posts:
PragmaticWench · 21/12/2022 08:35

Swimming can be good as the water cushions impact.

mynameiscalypso · 21/12/2022 08:40

My GP has prescribed me codeine (and sleeping tablets) for a flare to get on top of the pain. In general, mine has been reluctant to start anything else while I'm under the care of a rheumatologist but the other option is a course of steroids. It comes with certain risks - not least that it can make the skin flare really badly when you come off them - but I'm on a constant low dose of prednisone while I wait for my application for a new biologic to be approved. It's not perfect but it stops the worst of the symptoms. PsA is, generally, not as bad for damaging the joints as RA. I've had it for 20 years and I only have one joint which is showing more than general wear and tear despite the pain and stiffness I've had for most of that time.

Just a word on treatment, you won't be able to start on biologics on the NHS without having tried and failed two (I think) other types of treatment first. It can also be a slow process for getting approval for biologics when you get there. My hospital is currently running at about 6 months from application to delivery of the medication.

Volterra · 21/12/2022 08:47

Sorry to hear this, I was diagnosed in October and on something similar to you pending liver scan to see if my liver ok to have methotrexate, which after scan doesn’t sound like it is.

I think you should contact your GP and say you are having a flare and need something for the pain as it is seriously impacting your daily living amd would it be possible for your rheumatology appointment to be hurried up.

I had someone ring me from Versus Arthritis, his advice was 20 mins of exercise a day and break it into chunks eg. A couple of mins when kettle boiling. He suggested on of those little cycle things to go on floor when on sofa, swimming is good and walking. I think they have exercises on their website. He also suggested a food diary for 2 to 3 weeks to see if you can pinpoint anything that sets it off.

Deep sympathies, that must be very tough with a toddler.

creaky123 · 21/12/2022 09:00

Thanks all, I really appreciate the support and advice as I've been feeling like it's just never going to improve, it's got a lot worse very quickly over the last few months. I'll take your advice and call the GP, it's so much easier to cope if I can sleep comfortably! It's pretty tough with a toddler 😞

I'm a bit confused about the biologics as the consultant said DMARDs wouldn't work if I have it in my spine, but I didn't understand his explanation about why not. I'll try to clarify that whenever I get to see another rheumatologist.

Good ideas about swimming and breaking exercise into chunks- I was feeling really daunted by it but this sounds very manageable.

OP posts:
massistar · 21/12/2022 09:16

My DH was diagnosed with this 6 months ago after nearly a year of trying to get to the bottom of it. And that's with private health insurance. It took a lot of persistence, back and forward to the GP etc. I'll get the name of his medication as it has really helped. He swims 3 times a week and does yoga which seems to help too but he was super active before so not such a big jump.

I feel for you, it's a horrible condition to be in constant pain.

NeverDropYourMooncup · 21/12/2022 09:16

You can request a steroid injection into a muscle, but this might only be available through the consultant; it'll be worth it to try and get the money to see the private one again, request an im pulse and ask if he can transfer you to his NHS list if he works in the NHS at all or refer to a colleague who does.

Oral steroids can help and would be available through your GP, but they have greater side effects and cannot be discontinued quickly, whilst the injection wears off gradually (they're bloody amazing for stopping a flare like you're having now in its tracks, though).

You need consultant care to access DMARDs - take them, go through the process, ask for referrals for physio, for podiatry, and try to get onto Biologics asap.

Other things that do help are swimming/moving around in a pool (you still need to exercise, the water helps by cooling and supporting inflamed joints and tendons), the controlled situation of resistance training in the gym - machines because you can sit down and start with the smallest weight possible, rather than do the lifting heavy barbells thing that will put you at risk of injury compared to somebody who doesn't have PsA - a lot of braces and strapping, wearing proper running shoes with arch support inserts (shoes from a running shop, probably in a larger size than you thought you were), being careful of posture, eating healthily and making sure your bed is supportive and your pillow keeps your neck straight (I like the IKEA shaped pillow for that). I needed a memory foam topper on my mattress or I'd wake up in pain far more often - I now need to replace the mattress, but the topper did the job for ten years.

The inflammatory process puts you at higher risk of cardiac issues and diabetes - keep your cholesterol and blood sugar low and eat oily fish twice a week, lots of vegetables, pulses and meat that's 'a bit of a animal' rather than heavily processed. 'Diet' food is lower calorie, heavily processed shit, but appropriate amounts of less processed items give you nutrition. Make sure you have enough Vitamin D by supplementing throughout the year. I also take a multivitamin (with folic acid since I started Biologics, without when on Methotrexate but replaced by high dose folic acid on non methotrexate days as per consultant prescription) and Magnesium.

Whilst your joints may see less damage over time, something that can be affected severely is the tendons. So ensure the joints that do the most work are well supported and able to function smoothly - good footwear and supports protect your Achilles and arches, then help to reduce strain on your knees, hips, lower, mid and upper back, shoulders and neck, for example; it's a chain that relies upon all parts being right, which means get the feet right and posture follows.

If you go onto the Versus Arthritis website, you can read their advice booklet on PsA.

Finally, you'll likely have people not understanding that it's not wear and tear arthritis and it isn't Rheumatoid, including medical staff. Get informed and advocate for yourself - it's fine to say 'This isn't sustainable/it's not working/it's helping but it isn't enough, so can we look into other medication/treatment sooner?' And when you get the 'Have you considered that you think you're in pain because you're depressed?', don't rip their heads off, mainly because you'd leave a trail of decapitated idiots wherever you go, but point out that uncontrolled inflammatory processes and pain are both known to cause symptoms that are frequently mistaken for depression but they can instantly resolve with effective treatment for the disease process.

It can feel hugely overwhelming at first, especially in a flare, but once you're on something that works, it's amazing to feel the difference.

creaky123 · 21/12/2022 09:29

I called the GP and they're so busy that they can't do a triage call with anyone who isn't acutely unwell, I spoke to the receptionist and then got a text saying they've prescribed naproxen 😖 which I can't take with etoricoxib.

I have a simplyhealth plan so I might try an online appointment, no idea if they can prescribe anything but I suppose it's worth a shot.

Thanks so much again for these kind and helpful replies, lots of food for thought here and big hugs to everyone else also going through this. It's a pain!

OP posts:
creaky123 · 21/12/2022 09:30

NeverDropYourMooncup · 21/12/2022 09:16

You can request a steroid injection into a muscle, but this might only be available through the consultant; it'll be worth it to try and get the money to see the private one again, request an im pulse and ask if he can transfer you to his NHS list if he works in the NHS at all or refer to a colleague who does.

Oral steroids can help and would be available through your GP, but they have greater side effects and cannot be discontinued quickly, whilst the injection wears off gradually (they're bloody amazing for stopping a flare like you're having now in its tracks, though).

You need consultant care to access DMARDs - take them, go through the process, ask for referrals for physio, for podiatry, and try to get onto Biologics asap.

Other things that do help are swimming/moving around in a pool (you still need to exercise, the water helps by cooling and supporting inflamed joints and tendons), the controlled situation of resistance training in the gym - machines because you can sit down and start with the smallest weight possible, rather than do the lifting heavy barbells thing that will put you at risk of injury compared to somebody who doesn't have PsA - a lot of braces and strapping, wearing proper running shoes with arch support inserts (shoes from a running shop, probably in a larger size than you thought you were), being careful of posture, eating healthily and making sure your bed is supportive and your pillow keeps your neck straight (I like the IKEA shaped pillow for that). I needed a memory foam topper on my mattress or I'd wake up in pain far more often - I now need to replace the mattress, but the topper did the job for ten years.

The inflammatory process puts you at higher risk of cardiac issues and diabetes - keep your cholesterol and blood sugar low and eat oily fish twice a week, lots of vegetables, pulses and meat that's 'a bit of a animal' rather than heavily processed. 'Diet' food is lower calorie, heavily processed shit, but appropriate amounts of less processed items give you nutrition. Make sure you have enough Vitamin D by supplementing throughout the year. I also take a multivitamin (with folic acid since I started Biologics, without when on Methotrexate but replaced by high dose folic acid on non methotrexate days as per consultant prescription) and Magnesium.

Whilst your joints may see less damage over time, something that can be affected severely is the tendons. So ensure the joints that do the most work are well supported and able to function smoothly - good footwear and supports protect your Achilles and arches, then help to reduce strain on your knees, hips, lower, mid and upper back, shoulders and neck, for example; it's a chain that relies upon all parts being right, which means get the feet right and posture follows.

If you go onto the Versus Arthritis website, you can read their advice booklet on PsA.

Finally, you'll likely have people not understanding that it's not wear and tear arthritis and it isn't Rheumatoid, including medical staff. Get informed and advocate for yourself - it's fine to say 'This isn't sustainable/it's not working/it's helping but it isn't enough, so can we look into other medication/treatment sooner?' And when you get the 'Have you considered that you think you're in pain because you're depressed?', don't rip their heads off, mainly because you'd leave a trail of decapitated idiots wherever you go, but point out that uncontrolled inflammatory processes and pain are both known to cause symptoms that are frequently mistaken for depression but they can instantly resolve with effective treatment for the disease process.

It can feel hugely overwhelming at first, especially in a flare, but once you're on something that works, it's amazing to feel the difference.

That's really encouraging thank you, I'm looking forward to feeling better so much. You're so right about the mattress topper- I just bought one and it's brilliant 😁

OP posts:
Volterra · 21/12/2022 09:31

www.birdbath.org.uk/psoriatic-arthritis
These podcasts are good, worth listening to.

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