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.