Maybe this serves as a warning for others or just a wake up call for me. Last weekend I was on a boat at the lake with family. Some of my children and grand children wearing life jackets jumped off the boat to cool off. They talked g’pa into jumping in too. After much cheering I did a back flop into the lake. Because I can swim and had no intention of staying in the water I didn’t have a life jacket on. Shortly after the initial gasp from the cold water I started to feel strange, stiff and pain set in. It was time to get out. But the wind was blowing the boat away from me faster than I could swim as a sort of total flare was setting in…30 more seconds of hard swimming and I made it close enough for my brother in law on the boat to reach my hand. I was exhausted and got the scare of my life. I felt like I was a rock in the water, heavy and everything was pulling me down, it was an all out fight to tread water. With PsA, things are definitely not the same and a situation like deep water can be an unexpected hazard worth respecting. Still shaking a bit and pretty surprised. Not gonna let that happen again! Wearing a life jacket in the shower will take some getting used to!
My guess is that was just cold water shock, which is a big thing in the water. You were most likely too hot before you went in. Big boating fan here, often taking a week’s holiday on varying inland water hire boats which we motor ourselves. Never go into the water from a boat without a life jacket, regardless of your swimming ability. However certainly with hydrotherapy so often used to help PsA patients get more mobile, they do need the water to be quite warm indeed to allow the muscles to do their stuff. You were so lucky @Amos . Phew!
That’s really frightening! I wear my life vest when I dunk into the water when I’m out on my paddle board for a few reasons. Partly because I’m a bit lazy and really just want to float, and because it’s quicker for me to get back on. I also keep the leash on so that the board is attached to me.
We have cool water at best now, but you’re further north. Cold shock is definitely real! I’m glad you’re okay
I was going to say the same thing as Poo. Cold water shock is scary. I’m so glad you were ok.
I agree about the cold shock but it must be associated in some way with PsA. I’ve jumped in the water many times before and never had a body reaction like this.
You’re older now though……
Oh yea, I forgot that I am older now. Might be a sign of getting older! The results of yesterday’s 12 minute rheumy appointment: Stay on Taltz. Because any change would be just another shot in the dark, changing meds has as much chance of being worse as being better. I’m functioning, learn to deal with pain and flares better. In my case, she wants me to use Naproxen without fear and more often as needed. Referring me to a dermatologist to see if there is another approach to taming psoriasis down. She said that as a rheumy she can’t prescribe Taltz more than every 21 days but a dermatologist can prescribe it every 2 weeks for psoriasis. My psoriasis covers such a very small part of the body but when both eyelids are inflamed and sore, it is pretty miserable. Blocked tear ducts etc are messy and very annoying. “see you in 6 months”. Pressing on!
Blocked tear ducts could be from secondary Sjorens though. A well known co-morbidity with PsA. Talk to the dermatologist about that. I know someone who gets teeny things put in the tear ducts to stop them blocking. It helps her a lot.
I’m glad to see she wants you to increase the use of Naproxen but for pity’s sake get your GP to prescibe you omeprazole or something similar too. Stop chasing increased pain issues and start trying to stay ahead of them instead. It’s a change in mindset I know, but it helps daily function much better.
As you know I take Arcoxia/Etoricoxib. When Cosentyx was tormenting me dreadfully as it was dramatically dying on me last summer, I went up to 90mg per day. It helped. As Temfya is starting to work I’ve sought to reduce the dose. I got confident last week to go from 60mgs to 30mgs per day but actually that was still too much of a drop down, several niggles started to scream too loud so I’m back up at 60mgs again. I always ensure all NSAIDS and pain relief are prescribed in tablets of the lowest dose so I can play with increasing them and more importantly decreasing them when it’s right to do so. I take my next Tremfya dose (the eight week gap between doses feels such a long time often) in a couple of weeks, I’m hoping that will enable the reduction to 30mgs. We’ll see. It will always remain a balancing act though. I never expect a straight line improvement or disimprovement. There will always be jags to contend with.
And she has a very valid point about the issue of new PsA meds. Given they still have zero idea which one will suit which patient better, it is just a lottery game. Hence why the UK puts great store by effective monitoring of the number of joints affected and whether that is rising or falling. It can help to better illuminate progress or not as the case may be. As a patient that helps me enormously psychologically at least. As you can get worn out with all the issues you deal with day on day, so your idea of how you’re feeling can often get very skewed too. So a little bit of objective type measuring is always helpful.
Thanks @Poo_therapy , I really appreciate your attention to detail and the specifics you share from your own experience. I like the small dose approach to help make it easier to self adjust some meds. Sometimes I wish I could sit in a room with about 25 or more people with PsA and just share the journey. It would help with one’s perspective on their own life walk. I guess that is what Living with Psoriatic Arthritis is all about but when so few share, this room that we meet in seems a bit empty. I miss hearing from of the old regulars who were involved when I was a rookie at all this body nonsense. I’m still looking for the one pill that makes everyone that is acting out inside of us to “play nice…learn to get along.” PsA is a selfish, rude, bully always trying to be the loudest, talk the most and constantly interrupting life. It would be very interesting if many of us would post an answer to, “If PsA were human, what would you say in a conversation.” (Apart from the expected expletives)
That was Rinvoq for me! That’s why I’m so upset about the blood clot
You’re right, the forum(s all of them really) used to be so much more active. Active forums are so valuable in so many ways.
Go fuck yourself! I never asked you to show up and you have WAY overstayed your welcome
It’s been since before Covid and my hubby and I used to go to the Caribbean for a couple weeks every winter because I felt better in the warmth. The last trip I was having trouble in the stronger currents and a watchful guide noticed. She gave me a long length of rope to anchor to so I could still paddle around the boat while everyone else went farther out. Don’t stop doing what you love. Talk to tour guides. Many can problem solve our weakness to help us enjoy the trip.
There isn’t a magic pill. It’s all a matter of balancing things. I can remember when I first being screened for things PsA I had to go to the hopsital and I had blood tests, x-rays and something else I can’t remember. Anyhow I was there for several hours going from one out patient appt to another. And I was watching other people doing pretty much the same thing for their investigations for whatever too. It was an eye opener about those than might be chronically ill. And it felt like they were enjoying their day out which utterly and totally horrified me. Half the family came along for the ride too. I vowed then I would never be that sort of patient. I’m thankfully not. But at that stage of my life I was working in London so commuting full time and had a really active live outside of that, mucking out pigs for fun and being very involved in rural things. All of these things were active and doing sort of things. And I was finding active and doing incredibly hard sadly.
So facing into what PsA was all about was exceptionally hard for me. It’s exceptionally hard for most of us. The good people on here then helped me enormously as I pretty much went through tantrum after tantrum. It is sadly a much quieter forum now.
I belong to a UK only group for all issues about navigating PsA and the NHS. So I am immersed in what is going on with other people with PsA and helping people get the best advice the NHS can deliver. I read a lot of research into it as well. I also pop into individual biologic named groups on things like Face Book too and have ‘fun’ (that’s sarcastic incidentally) with the anti-pharma conspiracy stuff which is sadly so rife on your side of the Pond.
Once I got my head around the fact that PsA is never going to go away for me, I decided I would learn as much as I could about it from the scientists and my poor specialist PsA rheumy. I want to know what best practice is, what it looks like, what’s developing, what’s changing and and and. There is fascinating research going on into how treat autoimmune inflammatory conditions to include PsA like just recently they are discovering inroads into vagus nerve stuff and RA, which will likely follow on with us too. There is also huge work going on finding out how to tailor meds and treatment to the patient in cancer issues which will likely follow with us. So lots is happening. Knowing that helps me, it gives me hope, it helps to stop me wallowing too. I’m an eternal optimist really.
I consider my PsA is like the most strung out temper tantrum toddler imaginable. I vary between finding ways to distract it and actually wanting to slap it hard but managing to stop myself. However it refuses to stay on the time out/naughty step for long enough. So reluctantly I keep having to find yet more patience. My actually response is pretty much like @Stoney too with more Irish expletives too.
It is key to me to learn to live with it. PsA doesn’t define me. I’m still me but probably a nicer me than I was before too.Today I got up at 5.30am as we’re off to a rural steam locomotive fair in a vintage motor car for the day. Yesterday I spent most of my day resting on the sofa so as to preserve some energy levels. Tomorrow will be a slow one at work from home. But today will be fun.