Anyone had psa 20 yrs or more?
if so, how do you feel these days? Are you able to get out and do things? Or work? Just curious. I hope you don’t mind me asking. Just kind of seeing what I should expect if I make it 20 plus yrs. tia
Hi
, thanks for your great question! I hope others are willing to chime in with their experiences, as it would be very helpful. I think a lot of people wonder the same thing. In the meantime, you may be interested in reading some articles and forums where people have already shared some of their experiences/mention they've been living with PsA for ~20 years: https://psoriatic-arthritis.com/living/how-pain-changes-life, https://psoriatic-arthritis.com/stories/mess-two-steps-forward-three-steps-back, & https://psoriatic-arthritis.com/living/age-progression.
Best,
Minel (Team Member)I’ll definitely read them thank you!
Hi,
I’m over 20 years diagnosed. You sound worried about the future, so here’s my experience. (Tl:dr Don’t worry, you might be in for an easy ride.(
My first couple of years were the worst, pretty sore & limpy. I’ve had about 3-4 years on meds since then. The rest have been drug free / largely flare free. I have no bone damage and between flares I’m fully able and don’t have any pain. I don’t believe the hype that meds are the only way. I take them when they’re needed, stop when they’re not. Everyone’s different.
I moderate activity - I know I can’t go 100% at some things and my elbows don’t fully straighten - but overall I wish I could go back in time and tell myself just-diagnosed self to stop crying & worrying.
I work full time in a good job & have very rarely needed time off due to PSA. I’ve also taxied straight from the office to A&E for steroid shots...
A Dr once tried to say maybe I’d outgrown it, but it’s always there, it’s just under the surface & I ignore the smaller niggles, so for long stretches I feel cheeky claiming there’s anything wrong with me.
I’m a vegetarian, played regular sport most of the time (rugby, yoga, swimming), and I’ve always tended to do my drinking & unhealthy eating at the weekends, giving my liver a break most of the week. I feel like that’s a huge part of managing it as I tend to flare after booze, really bad food weeks (eg festivals) and if I don’t get enough movement. That said, I’m not very healthy in terms of weight or eating processed foods, so I don’t claim to be keeping it at bay with some miracle diet, I just listen to my body & lay off it when I start to creak.
The main thing I’ve learned is that flares aren’t just in joints. Inflammation reaches your brain and causes stress & depression. Every flare I feel like I’ve had PsA every day of my life, the future will be grim etc etc. Then I get some sleep & meds and feel like myself again.
I know I’m luckier than most. I also know that how we manage it helps, even for the worst hit people. My Dr told me all her patients are flaring in lockdowns due to not being able to control their movements.
I really wish I hadn’t lost 2 years at the start to fearing the future. As it’s turned out I’ve never been in that level of pain since.
I still worry what old age might be like. But then they give you more pain drugs, so something to look forward to... 🤷🏻♀️
I hope you can tell a similar story one day and that once you’ve found the right treatments & techniques for you PsA is just a small part of who you are. 🤞so happy that you are not going through it too hard! That’s definitely promising. Yes I spend many nights up until daylight laying and worrying and crying. Days where that’s all I can think of. Nightmares of my fingers and toes bent and finger nails separating from the nail beds. I’m a mess to say the least. So thank you for that honesty with your experience. I definitely have pain all over. Im scared because I can’t get officially diagnosed until my doc sees my finger swell up again and can examine it since my X-ray and blood didn’t tell much. So can’t slow it’s progression until I am diagnosed. But last week I got my first patch of psoriasis. Almost 1 year after being told its PSA without ever having psoriasis. So it’s just been a huge shock to me. Anyway I’m sure my fears are no different then others but it sounds like I need to really get a handle on my eating and exercise. I’m really not sure what’s good and what’s not to eat for PSA. I am looking for a new rheumy. She’s not giving me any info on it. Kind of brushing it off like it’s not a serious condition with no advice so everything I’m learning is online and scary. Very scary. Sorry for rambling and again ty so much,
Sounds very familiar, all that stress about the future, which is the strongest trigger for PsA so we get locked into a vicious cycle. I have so little psoriasis that I said no when my dr asked about it. He found a tiny patch and diagnosed me from that. Bloods aren’t very helpful for PsA apparently.
I don’t want to just say not to worry because that’s crappy advice to offer - if it was that easy no one ever would - but stress is our biggest trigger so getting a handle on our emotions and learning what helps us to avoid stress flares is the best thing we can do for ourselves. So it’s worth focusing on learning to spot a bad night coming and working out what helps you the most.
It honestly isn’t ever as bad as at the beginning, when you grieve for the healthy you that’s been lost and don’t yet know what treatment works for you. And of course pain is worse when you feel low.
I hope you are able to find some relief and comfort, along with the clear diagnosis you still need. Sleep and relaxation will be the best friends you can find in the meantime. xOh, and the food advice is usually just avoid too much processed food and booze. For me laying off the cheese really helps - when I can face it.
