PsA, biologics and managing symptoms

sarahsweet

Hi

This is my first time of posting…..diagnosed with PsA 2021 - had psoriasis since age 15 (am now 61) but had had no symptoms since my late 30’s. Three months after contracting Covid early 2020, had the worst skin flare up of my entire life and pains in feet, hands, wrists, elbow, lower back, knee, shoulders and neck which was diagnosed as PsA after about 6 months. Commenced on sulfasalzine and oral methotrexate, no response. Next oral switched to injectable 25mg weekly - no response. Added in adalibumab (Yuflyma) in Jan 24 - currently no response. Only time I feel relief is when on steroids - have had three oral courses since Dec 23, last one completed just over a week ago and all pain back 🥺. Awaiting appt to see my rheumatologist- I have called 3 times to chase and have been assured should see her in the next week - will be back on the phone first thing Monday.
Feeling quite low as am off work with symptoms - first time since diagnosis, and was so hopeful that biologics would ‘sort my aching body out’!! Feel like my life has been upended as unable to do/enjoy all the things I was before this happened. I meditate and have started to try yoga again and went for a walk around the block today, pushing through the pain….bit also not sure if that is a good thing to do?
just wondered if others have had to try a series of biologics to get disease under some sort of control and do people have repeated steroid doses? Sorry for the long splurge but I feel a little lost at the moment.

Any advice would be appreciated.

Sarah

LouLouCeCe

hello Sarah

I’m sorry to hear you’re struggling. I’ve just started biological yesterday, so am at the fingers crossed stage.

I wanted to address your thoughts on pushing yourself. I feel you. I’d say really try and listen to your body, rather than this come from a ‘should/ ought/ must’ kind of place. I’ve found I’ve had to stop running & yoga temporarily. I’m thinking I’ll be able to go back to these, but need to be gentle for now. I’m doing more mindfulness & chair yoga. Then my OT suggested Tai Chi, I started a class and find this is helping my mind more than anything! I think my body likes it too. It’s very gentle but does still feel like I’ve ‘exercised’. I’m having to re-work what’s ‘good’ for me at the mo, but it’s helping to think this is just what I need for now.

Lou

sarahsweet

thanks for the message Lou
I totally agree about listening to our bodies - chair yoga is a good thought too. It’s a bit of a battle trying to accept the new me and I think that is the hardest bit and the reliance on so much medication and wishing it to work! I will keep with my mindfulness too as I really find that helps.
Fingers crossed for a good response for you 🤞

Sarah

jamieA

Hi @sarahsweet

Your story is similar to mine - I've had psoriasis since I was 15 but it had been in remission for 15 years by 2020. It's reckoned I caught covid in March 2020 and by October my knees, shoulders and hands were giving me real issues and I was diagnosed with PsA. I was put on sulfasalazine which didn't do anything, MTX was added and the combination didn't do anything and then adalimumab was added and the combination of the 3 has worked for me. My rheumatologist says the sum of the 3 medications is greater than each individually - the term is synergistic. I've met other sufferers who have tried multiple biologics to find one that works. In fact my rheumatology nurse said she was glad the first I tried worked as she had 7 to choose from.

I hope you find something that works soon.

Naomi33

Hello @sarahsweet and welcome to the online community.

Sorry to hear your concerns about pain relief and exercises.

I would advise you to listen to your body like me on a good day I walk and feel wonderful then another day the idea is enough I then try meditation and light exercises.

Good luck with sorting medication out too @Naomi33

sarahsweet

Hi Jamie

Thanks for your response.

Good to hear someone else with the same experience and it gives me hope that there other options in terms of finding the right biologic therapy for my symptoms 👍. Did your skin flare after Covid too? Is your pain well controlled now and have you been able to get back to some semblance of life before PsA?

Regards and thanks again.

Sarah

sarahsweet

Hi Naomi

Thanks for your message…good advice. I think I have a tendency to ‘lessen’ the impact of PsA on me to those around me. Being kind to yourself is so important.

Regards

Sarah

jamieA

Hi @sarahsweet

By the time I was diagnosed with PsA my psoriasis wasn't visible. Most of my life I'd had it in the usual places - elbows, forearms, shins, ankles and head. But by 2020 it had disappeared and was only active in my ears. It didn't reappear anywhere else after covid. Seven months after covid I was attending hospital for the second time in a month to get my left knee drained and by this time my hands couldn't close and my shoulders were causing me problems. The young doctors couldn't drain my knee and called in the head of department. I was lying on the treatment couch when the senior doctor draining my knee asked me if, by any chance, I had psoriasis. I didn't understand why he would ask until he explained he'd previously been a professor of rheumatology and he thought my symptoms were those of PsA. He started me on sulfasalazine and naproxen and got me an appointment with a rheumatologist for 3 weeks later.

My skin has never flared and in fact the psoriasis in my ears disappeared after my PsA was stabilised - probably down to the drugs. However it's reappeared in my ears in the last year - though not as badly and nowhere else.

Regarding my joints I'm not back to how I was but in comparison to my worst times in late 2020 and for most of 2021 I'm very much better. I'd describe my worst as if someone had driven a large nail or wedge into each of my joints - shoulders, wrists, hip and knee. I was on morphine for a while. I was on the oral steroid prednisilone for about 4 months from late 2020 and then had steroid injections - initially into the worst joints but then later the medics gave general steroid injections into my rump. They'd normally give me 4-6 weeks respite though a couple didn't work. If that time was a 10 on a pain scale I'm a 1 or 2 now. I don't remember the last time I took any painkillers for my joints.

I was diagnosed with enthesitis in 2022 which apparently about 30% of PsA sufferers also get and that gives me a few issues with my wrist, elbow and ankle. My left knee needs replaced as it's damaged beyond repair.

However I'm back to walking my dog 50-60kms a week - albeit with a limp. I'm 68 and retired so don't have the pressures of having to work. I drive, do the weekly shop and my wife and I look after our 1 year old grandson 1-2 days a week. I can't do much of the DIY that I used to but I still do most of the cooking - though I've invested in kitchen aids to help me. I've pretty much given up my hobby of photography until now but with our grandson here I'm hoping to rekindle that this summer.

Sorry for such a long reply - I thought I'd give you as clear a view as possible - warts and all.

Hope you get stabilised soon.

sarahsweet

thanks Jamie that is a really helpful overview and am so glad to hear you are back to 1-2 on the pain scale and enjoying some of the things you used to do and managing well. I was a little worried about having regular steroids but hearing that you were on them for some months and also had multiple injections I feel that they are something to get me through everyday until they stabilise my symptoms/disease rather than something to be concerned about long term.

Thanks again for all the info.

Kind regards

Sarah