Anyone else here *without* psoriasis (sine)?

Posted Sat 4 Feb 2023 10.07 by Hooverfish
Psoriatic arthritis but no psoriasis. Have had it for probably 25 years, diagnosed last year. On the "drugs might work" trek.

Hi people! I'm one of those odd people diagnosed with psoriatic arthritis on the basis of a family member who has it - I have no psoriasis symptoms myself - thought to be about 9% of PsA patients. I thought I'd been one of the lucky few for whom methotrexate works (research says mtx works for about 20%, but it's all debatable, not particularly high quality stuff). I've been interested to find from reading the research that there's a lot of confusion diagnostically and in terms of what drugs might end up working between PsA "sine" psoriase (that means: without psoriasis) and sero-negative rheumatoid arthritis. I don't have any of the normal markers for RA either but I don't have damage to my DIP joints, instead it's my PIPs, which is more common in RA. I have got dactylitis in two toes. My rheumatologist put me on mtx with prednisolone steroids to cover the initial period before the mtx "works". Unfortunately, on cutting back the steroids, as suspected, the lovely magical feelgood period of nearly a month with no symptoms (including no bladder pain for the first time in a decade... and I managed to get some weight off... ) has vanished. Difene's still helping with the pain and stiffness but that's yet another drug you are supposed to take the minimum you can. I'm only 2 months in to the mtx, and he started me on a high dose, so it's just possible it will still work but it never was particularly likely. And you can't "stay" on a high dose of steroids even if it turns out to be RA, because of side effects. I am probably going to feel rubbish next week when the steroids go completely. The research does suggest that next steps might be different for us weirdo "without" psoriasis people - best to go on an IL-17 biological like Cosentyx (secukinamab). Unfortunately, I've had Guillain-Barre syndrome in the past which is a particularly nasty autoimmune condition, so they may not give me anything and definitely will not give me anti TNF-alpha drugs like humira. You can get tested to see if your immune system is upset via Th17 or Th1 but I'm not sure if those tests are available here. So this is really just to say yes, I know, I'm weird, but are there any other weirdos here, and if so did anything work for you? Thanks!

Posted Sat 4 Feb 2023 18.03 by Dianeinthemountains

Yes, I’ve also been diagnosed with PsA, but I’ve never had psoriasis and it doesn’t run in my family. My symptoms are achy fingers, elbows and toes, hip pain while sleeping and flu-like fatigue and aches after weightlifting. My rheumatologist made the diagnosis based on my X-rays, my elevated inflammation markers and my symptoms. He started me on steroids to confirm that my condition was caused by inflammation and it felt as if I drank from the fountain of youth! Then he put me on Methotrexate for three months and it didn’t work for me at all. Next, I did three months of Humira and also had no improvement. He wants me to start Cosentryx next, but I’m trying my own program right now of intermittent fasting and a food elimination diet. Also, getting back into the gym with no excuses. We’ll see how it goes! Anyway, my rheumatologist said that while he can’t definitively diagnose my condition as PsA, it’s definitely an autoimmune disorder and the treatments are pretty much the same. Best of luck to you!

Posted Sun 5 Feb 2023 08.56 by Hooverfish
Psoriatic arthritis but no psoriasis. Have had it for probably 25 years, diagnosed last year. On the "drugs might work" trek.

Thanks Diane - completely agree with you about the "fountain of youth" thing with steroids! Amazing. I think it's perfectly sensible that disease categories that have been developed on "phenotype" (what symptoms you have) are being revised now they have more information about the genetics and the cytokine markers of the different diseases. What drugs actually work also helps to define what "disease" you have, and is the most important thing for us patients. On 10 mg of prednisolone, I was back to my "normal" self and was in a great positive spiral where I could get out and do plenty of exercise, do physio exercises to improve my mobility and I even managed to lose some weight - my motivation was excellent! Once it dropped down to 5 mg, I was like a cartoon character still running off the cliff for a couple of weeks but I've been fairly rough for the past week, and I am off the steroids completely from this week - not looking forward to it. Fairly sure when I see the rheumatologist in March he will make me do one other DMARD like sulfasalazine or aprimelast, before I'll be allowed try Cosentyx, although having had Guillain-Barré Syndrome should allow me to skip Humira. Do you get a strange internal cold feeling at all, after exercise? When I'm bad, I sometimes just have to go to bed to warm up and recover even though the house/outside temp is "normal". Also, do you have other autoimmune conditions or family history? I have pernicious anaemia, high cholesterol and osteoporosis, my Dad also had really severe arthritis, and my brother has psoriasis, I do think you are likely to get improvement with Cosentyx based on the research results (60%), so if the diet and exercise doesn't work, there's definitely still hope for us! Good luck.

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