As the year comes to an end, how about a little survey?
Looking back over the year of 2025, would you say that your overall condition today is stable, better or worse? Go ahead and elaborate, our stories are always significant to others and your input is valuable. Please remember, mental health and physical health are both part of the story.
What a great question! Overall, I would say stable, but it was quite a ride. In May I told my rheumatologist that I needed a change in medication, which included crying in her office out of frustration and a bogus fibromyalgia diagnosis. I was put on Rinvoq which was an absolute superstar! I felt amazing! Better than in years!
Then I got a DVT and a PE. I had to start fresh again with cosentyx this time, and a blood thinner for three months. Overall, I would say that I’m in better shape now then at the beginning of the year.
I’ll also add in that I started a weight loss journey in July of 2024, and am at my goal weight, having lost 80 pounds, with over that being last year.
Well, congrats on the weight loss! I celebrate when I lose 4 pounds! At my last rheumy appointment, she told me that maybe I have fibromyalgia too. I was ticked off but suppressed my thoughts. (for a change) Its so frustrating when a bogus diagnosis theory is tossed out at us. I have two weak spots that psoriasis flares up, one of them being my eyelids. I’ve had inverse psoriasis since 2012 and my new dermatologist looked at it and said, “I should do a biopsy to make sure ‘cuz it isn’t presenting like psoriasis.” Inverse psoriasis is smooth, not raised and I’ve had classic inverse psoriasis all over the creases of my body and now she isn’t sure? Sorry…you triggered a rant. So, can you or would you go back to Rinvoq? Were you put on prednisone while in the gap between Rinvoq and Cosentyx? Glad to hear of stability and hope with the improvement!
Well Tremfya ended up being a fail as whilst it was amazing for around 6 weeks or so in April, it then sort of fizzled out. And various parts of me regularly inflamed whenever they felt like it. So the fatigue part has been high at times. So I’ve otherwise struggled through this year. Last dose of Tremfya was 2 Oct it has a 9 week washout period and new med is being delivered on 5 Jan, which is Skyrizi.
Meanwhile I stopped work on 19 December for two weeks over the Christmas/ Holiday period. On that night my knee blew up and the following day I was unable to get off the loo without help. So entered another week’s worth of steroids simply to get me around my own house. Finally doing better now but sitting down can still be painful.
So definitely less stable for sure but feeling hopeful of Skyrizi doing something positive. If it doesn’t, Rinvoq is next but I’m terrified of its cardiac side effects along with the clotting issues. Once that happens you can’t retake it either. However if possible I’ll give Skyrizi as long as I did Tremfya however. So here is hoping.
At least now I can drive again and walk slowly provided it’s on the flat. So I’ve looked up my favourite beach to see what the tides are like for today. And I’m in luck. Low tide is lunchtime. Low tide on this beach gives hard flat sand and miles of it. So I’m taking my dog for a walk finally. I had this vision of spending most of these two weeks walking my dog as much as possible (which was never planned to be huge long walks given how I was) and reading books and watching silly movies. So far I’ve managed just some of the silly movies scenario as steroids make me quite intolerant and grumpy too. I’ve also had to deal with my partner’s elderly parents, one for Christmas Day and the other to see because he got ill. Thankfully both are doing better now too. But I actually hadn’t much to give either of them sadly, not when I was scrapping the end of barrel energy wise too. So it’s been a really challenging year. And I’m tired of the challenges too. It would be nice if 2026 was a year when bits of me just stopped blowing up willy nilly and I could actually execute some plans instead of persistantly cancelling them.
Thanks for your input @Poo_therapy. Have you considered changing your name to loo-therapy after your ordeal? 
Were you a part of the decision to change to Skyrizi or just following docs orders? Is Syrizi quite different than the other biologics you’ve been on? I hope that the only challenges you have in 2026 are by choice!
Tremfya hits interleukin 23 as does Skyrizi so it’s a logical choice given both also work for Crohn’s issues too. But more importantly and primarily, I did have an initial positive reaction to Tremfya, so the odds are I could well do so again. So it’s definitely my choice. Sadly Bimezelx is off the table for me given the additional Crohn’s involvement nonsense. Otherwise that would also be a logical choice at this stage too.
You know me by now Amos, I would never not have utter control over which med I try next! 
I also never blithely follow doctors’ orders unless the doctors have been fully interrogated and have persuaded me their ideas are the right ones to follow. Thankfully unlike our friends in the USA, I have no insurance company interference in my medical care at all either. Sadly the level of my disease activity otherwise qualifies me for whatever is available to PsA patients in the UK too. I believe that is the whole gambit of choices too. Skyrizi is fairly new to the UK also but has been around in the USA for some time and has a good reputation with both PsA, psoriasis (which doesn’t affect me now) and any Irritable Bowel Disease. Time will tell no doubt but I am hopeful. Once a month for two months and then every 12 weeks. So hopefully by the end of the summer I will be doing a lot better hopefully. Despite, I remain an optimist.
I despise when they do that. It’s really them deciding that they can’t find the right med. I made clear when I went back that ALL my pain and fatigue had disappeared while on rinvoq, so clearly NOT fibromyalgia.
The presentation of different types of psoriasis, they should know this.
I was put on prednisone because I had an awful flare when I came off the rinvoq. I think I found it being on for about a month, a taper.
Would I go back on the rinvoq? I want to give cosentyx a a really solid opportunity to work, and it is working overall. The issue is that would have to be taken in conjunction with a blood thinner and I think that was what made my hair thin so I’m really frustrated about that.
Also, about the weight loss. It did diddly squat for my inflammation. That’s more or less what I expected. It’s been really awful how many people have said that my arthritis must be SO much better now that excess weight is gone. Nope. I still have an autoimmune disease.
As usual, you make a lot of sense. I found tapering off of Rinvoq pretty miserable and swore I will never go back on prednisone. But I’ll likely beg for it at some point of misery. Maybe if we can eventually all get on one biologic we can buy in bulk from Costco. Or, with AI, eventually there will only be one pill for all ill! May we live long enough to find out great improvements and perhaps a cure.
That’s exactly what all the research says about weight loss for our disease. I could certainly lose weight. But I actually don’t see much point until I’m more stable PsA wise as the inflammation levels presently will make my body cling on to the weight just harder anyway. I do lose weight when I’m doing well just anyway, so for now I’ll wait some more time. One thing at a time for me. But so well done you for the rest of the stuff that less weight means such a positive effect.
I’m into my twelfth year of PsA diagnosis, I’m now 73. Fatigue and enthesis are my most troubling symptoms - although joint pain etc play their part. For 10 years I’ve been on Benepali, now every 5 days.
2025 has been a struggle PsA wise. I eventually saw a rheumatologist earlier this month after a two year gap!
He recommended a 6 week steroid boost and the addition of hydroxychloroquine.
I started the steroids last week - they seem to be affecting my mood more this time and not helping with pain that much - but a bit more energy.
I should have started the hyd … at the same time but with Christmas and mixing with crowds didn’t want to deplete my immune system too much.
I’m now debating when to start the hyd …. Not sure of the side effects (I was on it at the beginning of my journey- but can’t remember that far back! ) It’s supposed to help with my fatigue but will take 12 weeks to properly kick in.
Here’s to a great 2026 - the Year of the Horse - will it see us galloping? Well perhaps a gentle trot 
Unfortunately hydroxychloroquine is no longer licenced anywhere in the world for PsA patients. It can reignite psoriasis plus it can affect your eyes and PsA can also affect your eyes too. It’s simply deemed a really bad med for us so all licencing to treat PsA is now withdrawn.
Why hasn’t your biologic been changed to another one too - again Etanercept or any of its biosimilars like Benepali isn’t licensed for PsA patients beyond once a week? There are loads more biologics to try which would in turn have a better chance to help withyour PsA symptoms such as enthesitis and indeed fatigue levels. Fatigue comes from excessive disease activity which obviously means your Benepali is no longer working as well as it could do.
Well Poo_therapy - I am at a loss!
I’ve decided to wean myself off the prednisone quicker than prescribed as I’m on a low dose and only been on it 10days. It hasn’t agreed with me this time at all and I now have a sore throat and cold starting.
I’m glad you’ve told me about the hydroxychloroquine - I wasn’t happy about it so will give it a miss.
I moved to Devon six years ago but still attending St George’s in London. I think I’ll ask to be referred to a rheumatologist in Exeter.
Thank you for your reply - and Happy New Year!
Gosh I had no idea you’re in the UK too. I’m also in the UK. And that’s not the first time I’ve heard of PsA patients attending St Georges in London being given Hydroxy either. They ought to know better. And they ought to have changed your biologic too, instead of ridiculously giving you Benepali every 5 days. Under NICE guidance NG65 it’s really clear how PsA should be treated and the various med protocols to follow and St Georges isn’t following any of that with you at all. That’s extremely concerning.
I’ll come back with some ideas of decent PsA aware rheumys in Devon as soon as I can. Have you phoned the Royal United Hospital in Bath (a centre of excellence for PsA) and see if you might hit their catchment area? It’s worth a shot. If you do ask if you can see Dr Ellie Korendowych. She’s my rheumy and is seriously excellent on all things PsA. There is an outside shot you might get in there, given you’re in Devon. I live in Kent but managed to get into Bath in 2016 under the old ‘choose and book’ NHS scenario so I’m seen by Dr Ellie thankfully.
Sadly given PsA is rare, not all NHS general rheumy depts have any experience in it. But I do know some PsA patients do have a good experience in Devon so let me get some names for you. Hopefully you can get better sorted out soon and have a much better 2026.
Thank you so much for your quick response and great advice. I’ll ring the bath hospital asap.
One of my problems is my GPs don’t understand PsA either - one even told me I couldn’t have it as I don’t have psoriasis. Doesn’t fill one with confidence.
I’d be really grateful if you could drop me some doctors I could ask for in and around Devon - but hope I can be seen at Bath.
Hello from Jalisco, Mexico where a few locals still seem convinced they can catch leprosy or AIDS just by looking at me. (Spoiler alert: they cannot. And no, I have neither.)
What I do have is a long résumé of creative diagnoses courtesy of former American rheumatologists and dermatologists. Everything except a real focus on PSA. Those labels were handed out like party favors, and I’ve politely declined to accept them. My goal has always been simple: get back to the root of the problem, not keep stacking new diseases on top of the old one because it’s easier than admitting you don’t know the answer.
So here I sit in sunny, humid Mexico… not eating salads.
Yes, that’s the plot twist.
After more than 20 years of knowing what to eliminate or add to my diet, I landed on a “concoction” that actually works for me. I’m walking, stable, swelling, and joint issues under control. I wear rings again. My right knee no longer requires routine draining. Small victories, big deal.
My formula
• 20 mg over-the-counter methotrexate every Wednesday
• Zero alcohol (okay once in a while on a Saturday)
• Sun + humidity (turns out my body likes them)
• Plenty of baths
• Long walks (because a body in motion really does stay in motion)
• And under absolutely no circumstances do I order a salad
Discovering that leafy greens were the enemy cut joint pain and swelling by about 99%. All my life I ate “normally,” then vegan for some years, then vegetarian (felt like forever), with no improvement to mention. Last year, I started eating red meat almost daily. Sometimes chicken. Occasionally potatoes, white rice, or noodle pasta. Green beans or broccoli. The occasional pizza cheat day, which may or may not come with consequences.
Wishing you all health and happiness in 2026. Here’s to feeling good, moving forward, and doing whatever we can that works 
*Note: I’m American with healthcare, but have not seen a doctor in the USA for many years. Just the “doc in the box” pharmacy doctors in Mexico, and I do my labs directly here, just like a menu at a restaurant, I order what I need to keep an eye on my important stuff, like my liver 
. I am NOT recommending this lifestyle, only sharing!
What an interesting question Amos.
Firstly good to hear some semi positive stories but truthfully the disease just marches on doesn’t it.
My year involved starting Taltz, which after 7 months has done nothing, a prednisone blast for 4 weeks so I could go on holiday and ended up with a coral injury that turned into cellulitis and thrush which took 3 lots of antifungal Tablets to blast it.
Interestingly my GP has been my saviour and is not impressed with my current rheumy. Me neither. She’s suggested I see someone else and I’m thinking maybe Bath hospital as they are experts. She had also sent me for mris which hospital hasn’t bothered with. And she told me that 50% of people don’t respond to Biologics.
Well done on the weight loss Stoney. I lost 10kg and am vegan and it hasn’t mind a blind bit of difference either
Poo I’ll be interested to hear how you get on with Skyrizi.
So a happy new year and one can just hope for a miracle. I’ve been accepted for medical cannabis. Rather than live on opiates. So we’ll see how that goes.
Sadly Flin unless you’re in the Bath catchment area you can’t be seen either privately or on the NHS. They stopped out of area new patients around three years ago. I get seen in Bath but have been going there since 2016. Where are you based? I can possibly help with other ideas.
Hi there,
Well I’ve got some names for you.
The top person who was trained in Bath too (always a good thing) is Dr Kirsten Mackay in Torbay Hospital. She’s also published some research papers on PsA too which is always useful too as it means they are far more invested in treating PsA optimally. I believe you can get an initial private appt with her too which might hurry up the NHS waiting list. She would be the best to see I believe.
There is a Dr Aung also in Torbay Hospital who was said to be very thorough and knowledgable but doesn’t have the PsA research background.
And lastly there is a Dr Susannah Earl at RDE Exeter but again no PsA research background.
All three were recommended by PsA patients.
So if Dr Ellie in Bath can’t see you if you’re not in the catchment area at least you have further rational options. You can bet none of these will have you on Benepali every 5 days or try and prescribe you hydroxy too. Best of luck.
Hi
I rang Bath and switchboard said I could be referred. So I messaged my doctor. He came back saying he couldn’t do it, it had to be from mySt George’s team to Bath.
So I messaged Dr Kaul’s secretary who came back to say it was my doctor who had to make the referral 
But she’s going to ring Dr Kaul on Monday to get his take on it all.
Honestly, talk about going round the houses!
It’s great to have these other names to fall back on if I can’t get seen at Bath - obviously once I find out who can make the referral!
Than you again for all your help - it’s keeping me sane - just …..
Best
Jayne
Fantastic news. I was hoping Devon could be included in Bath’s catchment area for PsA stuff at least since there are few PsA specialists west of Bath. It is actually your GP who refers you because essentially it’s like a ‘second opinion’. And that sort of thing comes from your GP. So it can’t be Dr Kaul in St Georges. So put your GP right on that.
Ask to be seen by Dr Ellie Korendowych. I would avoid Dr Will Tillet at all costs. I saw him once and ended up writing a 5 page complaint about him. He did apologise but I asked never to see him again. I know other people who are treated by him and he’s just not hot enough on treating optimally or indeed listening properly and has people staying on the same biologic for years when it’s clear damage is occurring and the med has simply run out of steam. He seems to forget that no every med works for every patient. Dr Ellie on the otherhand gives each biologic around a year or so and then if it’s not working well enough will discuss changing it.
Do be aware NHS waiting times for first appts at Bath are long. It might be possible for you to see Dr Ellie privately too since you’re in the catchment area just anyway. That might help speed things a long a little.