PsA pain

Howorth

I have PsA and take methotrexate and Amgevita the nursecsaid my arthritis is not active at the minute. I am in pain every day with my hands feet hips and back. Can anyone give me any advice please. How do I know if it is a flare does there have to be inflamation if its a flare? I am also having difficulty sleeping

jamieA

Hi @Howorth

I was diagnosed with PsA in late 2020 and take sulfasalazine, MTX and Amgevita. I know what you mean in trying to discern if you are going through a flare - there seems no specifics to it. I did recognise I was going through one flare after I had reduced my sulfasalazine under guidance from my rheumatologist (and quickly ramped it back up) but at another time she told me she thought I was going through a flare that I hadn't recognised. I don't think my joints were swollen at the time.

My sleep pattern had been disturbed since before diagnosis with me waking between 3-4am with my hands feeling particularly sore. One rheumatologist told me that the body naturally produces steroids - cortisol - but that during sleep it stops and that might be the cause. I had an orthopedic consultation earlier this year and the consultant gave me what he described as night splints for my hands which I now wear overnight. After getting used to them I rarely wake at night now with sore hands. Funnily enough last night I didn't wear them as they were in for a wash and woke at 3:30.

I was referred to a pain clinic and from that was prescribed capsaicin cream for my knees and lidocaine patches for my back which both helped - though I can't get capsaicin cream at present. I was also referred to nhsanywhere rheumatology physio and I've had two 12 week courses over the last two years and continue to do the exercises. I've also seen an occupational therapist who gave me exercise putty for doing hand exercises and a podiatrist for assessing footwear. I walk a lot and my consultant has stressed the need to keep my joints moving.

My joints still ache regularly and I've been told I need my knee replaced but I'm in nowhere near the pain levels I was.

helpline_team

Hi @Howorth

Thanks for your post to the Helpline.

I'm sorry to hear that you are experiencing so much pain.

Because Psoriatic Arthritis may not show up much when they do some blood tests, have Rheumatology done some recent scans? That can be a useful line of questioning if you do not agree that your inflammation is controlled. Ultrasound scans can identify inflammation.

@jamieA has described so well how your daily self-management routines can support musculoskeletal health, and do see some of our exercise & diet information.

If you'd like a chat about things you'd be most welcome to ring us of course on 0800 5200 520.

Psoriatic arthritis | Psoriatic arthritis | Causes, symptoms, treatments (versusarthritis.org)

Exercising with arthritis | Top tips, specific exercises (versusarthritis.org)

Eating well with arthritis | healthy eating for people with arthritis (versusarthritis.org)

Sleep | Improving your sleep when you have arthritis (versusarthritis.org)

All the best

Guy - Helpline Team

Howorth

Can anyone tell me if amgevita jabs stop pain. It seems the day after I have taken it my pain is reduced but by about 4 days after it starts to return. Is this just in my head ?

helpline_team

 

Hi @Howorth

Thank you for posting on the online community.

I am sorry to hear that your pain is returning after 4 days of using amgevita. Drugs work differently for everyone, so what works for one person may be quite different to another.

You wonder if it is in your head, it might be helpful to give your rheumatology nurse a call for further advice and reassurance.

You could also repost on the living with arthritis forum where I am hopeful you will receive more comments.  

https://www.versusarthritis.org/about-arthritis/treatments/drugs/adalimumab/

https://community.versusarthritis.org/categories/living-with-arthritis-forum

Best wishes

Lynda

Helpline Advisor

jamieA

Hi @Howorth

Last year when my consultant thought I was having a flare she said I may be generating antibodies to adalimumab and she took a blood test to check. Seemingly it's not that unusual so it might be worth speaking to your rheumatologist. In my case the blood test checked out ok so I've remained on Amgevita. I do notice that towards the end of the two week injection cycle my joints ache more - but it is an ache with me not a pain. When I attended the Nuffield Joint Pain programme there was another PsA sufferer who was now on his 4th biologic as the previous 3 hadn't worked long term. I don't think it's an exact science as when I showed significant improvement after two months on Amgevita my rheumatology nurse said it was good I had responded to the first biologic as they had 7 biologics to choose from.

I've also been diagnosed with enthesitis as seemingly about 30% of PsA sufferers get that as well. That's where the area where tendons and ligaments connect to your bones gets inflamed and painful. I find exercise helps that as well as cold packs.

I hope you get to a stable point soon.

Howorth

Thank you for your support I feel like I'm always complaining to my family I think you are right it is an ache and pulsing feel. I have been seen by podiatry and physio. They said sometimes the damage done leaves you with pain