Arthritis query

[Chattycathydoll]

Sorry, posting for traffic because I’m fed up with my stupid joints and inability to google effectively

I have psoriatic arthritis. Does anyone know if it can spread to include joints it didn’t previously affect (in which case I should talk to rheumatologists) or not (in which case I need to talk to my GP again)?

NHS page doesn’t seem to show anything about it. I’ve had arthritis in 2 areas for years, now a third is playing up. The weather isn’t helping!

It can affect any joint, although it is typically hands and feet.

If yours is getting worse then it is back to rheumatology to look at your disease modifying treatment.

www.psoriasis-association.org.uk/about-psoriatic-arthritis?gclid=Cj0KCQjwyOuYBhCGARIsAIdGQROa-tpWq8E4hem8fOh4c_bCIlnJtTCvAnZQCqV0oJ3Q1lIu57-koFsaAq5yEALw_wcB

Hi, I have psoriatic arthritis and have had it for 26 years. Yes it can come and go in different joints, recur and then go into remission, and flare up all over.
it started in my finger joint, then two fingers, then three. Toes next, all in turn, except the big toes.
Then15 years later, knees and most recently hips.
for me, it’s been trial and error to find the drugs that work. When they do work it can completely go away for a while.
sorry it is bad for you at the moment.

what are you on?

I’ve lived with psoriatic arthritis since I was 7 - 26 years now. It absolutely can spread and if you think you have activity in new joints you need to get in touch with your rheumatology team - your medication might need adjusting or they might recommend steroid injection to stave off initial flare damage.
Happy to answer any other questions. 👍

Are you on an medication?

It's an interesting question and I've always assumed it's degenerative (I was diagnosed in 2018) but I've never actually asked the question.

I'd start with your rheumatologist but GP can help with pain management.

any*

Thank you so much, all. I was diagnosed a few years ago (but like most people had the symptoms for longer!) and this whole time it’s only affected my spine & one hip. I’m currently on naproxen and had a steroid injection a couple of months ago.

I’m now experiencing the same type of pain in my knee. It’s awful this evening

Naproxen isn’t treating the cause, just the symptoms. It sounds as if your disease is active and you need more aggressive treatment before it starts to damage your joints.
I’d push to see your rheumatologist and ask whether they’re considering you for DMARDS. Methotrexate is the first line option - I’ve been on it 23 years. It doesn’t suit everyone and it’s a pretty hardcore drug but it’s effective for many.

Yup. Mine is totally random. Varies from day to day and every proper flare up I have will find a new joint to attack that it's not attacked before. I seem to remember reading that PsA is far more random in the way that it works than RA.

Well that sounds terrifying!
Have you found your treatment affected by covid? I feel like I’ve had to push and fight for everything, even explanations of what they’ve said when was physically at the appointment because they’re trying to rush me out the door. I have only had painkillers and steroid injection so far. I didn’t know there was anything you could do to treat the cause!!

omg, I’m sorry. That sounds awful. So far I’ve been counting my blessings it hasn’t touched my hands, I sew all the time and earn money as well as making DD’s clothes. I’d been desperately hoping it didn’t migrate to other joints as my biggest fear is not being able to sew

@Chattycathydoll If it's any help, I've had it for 20 years and it's barely touched my hands. I had one month where one finger was bad but it normally sticks to much bigger joints in me so I will keep my fingers crossed (if that's not too insensitive a phrase!) for you. I would agree with others though that it's worth seeking treatment for the underlying disease to stop it progressing.

I'm surprised with a diagnosis and being under a rheumatologist, that you've not been offered medication.

It's important to protect your joints and DMARD's should have been prescribed. Naproxen is pain management only and a steroid injection isn't a long term treatment.

Sulfasalazine and Methotrexate are the most common. I'd definitely go back to your rheumatologist.

You need to ‘arm’ yourself with more knowledge about your diagnosed condition from reliable sources. When you understand a bit more about the disease you can then decide how best to approach your Doctor and/or Rheumatology department if you are currently a patient.

All of the leaflets from my local hospital are published by a nationwide charity, Versus Arthritis.

You can find out lots of information by reading through the links on this page:
www.versusarthritis.org/get-help/

The information leaflets are free to download and can also be read online. They have a helpline so you may prefer to speak to somebody with understanding and experience who can answer any questions you may have before deciding where to start.

Yes, it can. It can also affect your tendons. It's always been the main difference to my days - what bit is hurting me in new and novel ways now?

I'm on biologics for it and they have completely changed my life for the better over the last couple of years. You can't be considered for those without rheumatology and from following the NICE guidelines for other medications first (which could well give you remission in themselves).

It's also very, very important to maintain good posture/biomechanics and stay strong and active so you don't lose strength and mobility. Knee pain can be caused by weakened leg and hip muscles and overpronating your feet (dropping them in when you walk), which can be prevented with orthotics and suitable supportive footwear anything up to two sizes larger than you'd normally wear to give you shoes actually as wide as your foot joints and able to take the orthotics.

Since starting meds and working on the strength/etc, I can sit here and say well, there's a grumpy tendon in my left elbow and one in my right shoulder and my back is a little stiff, but that's all and it's probably largely related to going to the gym after work today. Far better than the days I'd wake up and feel like I'd been hit by a bus and then dumped in a cement mixer filled with rubble and lava.

Getting proper treatment has been the key.

Yes there absolutely are medications that treat the cause. Auto-immune diseases come from an overactive immune response - in our case it attacks our joints. Most medication is aimed at dampening down the immune system to stop it attacking. Methotrexate is actually a chemotherapy drug, but it’s used in much lower doses for arthritis control.
The fact you’ve not been assessed for DMARDS surprises me - you should absolutely be on something that is actually treating your disease! I would insist on seeing that rheumatology dept and ask why you aren’t. Do you have access to a nurse advice line?
Covid has meant I’ve only had telephone consultations since 2020, but as I’m very established and little has changed, it’s so perhaps not so important for me.