Yeah fair enough. Well I’d definitely be looking at the night sweats as an indicator of whether your immune system is cooperating- obviously not yet. It is something that can be useful because it is separate to the pain, which can sometimes be a bit self-perpetuating.
In the UK, going back on a med if another doesn’t work, doesn’t really happen. Solely I’m led to believe of the high likelihood that you’ll have grown antibodies to it so it won’t work for you anyway and therefore it’s more likely to be a waste of NHS funds. Hence I suppose we have rigourous time slots spent on meds to see if they work, (obviously not with concerning side effects) but we certainly don’t chop and change meds as fast as many of you do (often insurance perpetuated too sadly) in the USA. Remember @tamac there are the JAK inhibitors to consider too.
Wonder if that would hold true for Taltz. It is a close cousin to Cosenytex???
Not necessarily. If Cosentyx fails me now the next one on the list for me to try is Talz. If Talz fails me then it’s on to the JAK inhibitors of which more are being approved for PsA too.
Hi @tamac. I wanted to add my 2 cents. I had really good luck with different forms of PT, and usually a good therapist is the key to success. Unfortunately, my fav physical therapist took a job at the VA and I no longer have access to her. At PT they always did gentle everything—stretches, massage, exercise, and they always gave me “homework”. I think the homework is essential. Actually, now when I have back troubles I just pull out the printouts they gave me and do the exercises at home. Also, ice, ice and more ice! I can’t stress that enough.
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I had to pull the plug on PT. After emailing my doc again, he said it sounded like the best thing to do. I was suffering with terrible back pain in all my muscles. Doc said it sounded like the PT was making my muscles become more inflamed. and that happened to some people with PT.
I’ll keep doing the shoulder and hip work, but I am going to have to see if I can work up to more PT. The therapist told me that the best thing I could do was try and start walking as much as I could and build up.
My back was doing better, but I pushed myself to go out and plant some flower bulbs I had ordered. That wreck my back and my hands. Seemed like a good idea. I have about 200 more to plant!
I had been really pissed off I can’t do anything anymore, and pushing myself anyway.
We’ve all done that sadly. I’m just putting a huge ‘like’ on walking. I find that loosens things up for me back wise most of all. Without a daily walk I stiffen up considerably. However get someone else to plant the bulbs - seriously. Nothing worse than all that bending over.
I’m not surprised that you had to stop PT. But keeping moving is still ultimately a good idea. I do agree with @Poo_therapy about the walking. And when I can’t walk, I can still typically get on the exercise bike. If I don’t move my pain levels are always going to be higher, and especially my back becomes more and more of an issue.
I am starting to learn that too. If I sit and do nothing for several days, I hurt more. I will have to find a happy medium somehow.
But moving is a chicken and egg problem!
I didn’t mention that I had to go get a steroid shot because of my back pain. It helped about 10 days, as usual. I am still have a great deal of pain and burning in my muscles in my back.
Ask to walk a neighbour’s dog in a park. As you know I have a dog and I appreciate you’re a cat person. But walking with a dog is more enjoyable than walking alone. There have been times that just getting to a field was enough ‘movement’ for me so then I threw a ball for the dog. But having to get out with the dog kept me moving when other things (usually fractures from oestoporosis issues) would have preferred me not to. It helps. Getting out in ‘nature’ also helps. An awful lot.
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That’s a great idea. I used to walk dogs as one of my jobs. But even with doing it a few days a week, multiple dogs at once and driving all over, I would still sometimes borrow a neighbor’s dog.
I recently found my emergency dog walker status for a cat client turn into an everyday thing. Not really thrilled with the addition to be schedule. But Tucker is the cutest and sweetest puppy ever, and really enjoyable, so I can’t complain too much.
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FWIW after my stroke PT was great. The day I put my rollator up was a great day indeed. BUT the pain was incredible and what made it bearable was the light at the end of the tunnel. Speech therapy was a beetch but there was light at the end of the tunnel. The shrink, I still don’t understand, I didn’t need to spend $200.00/hr to have someone tell me I was al f’’'ed up, but it would be okay if I got used to it. BUT what was incredible was the OT. I always have dealt with this PsA thing with visions of the Tin Man in the wizard of oz and lived by “Motion is Lotion” She taught me motion isn’t exercise. I wasn’t preparing to jump out of airplanes anymore, I didn’t HAVE to fight through Brush to find a wiley cut throat trout, I could enjoy the wilderness without bushwack for 3 days. she redesigned my office, rec room etc to match MY abilities. Then in cahoots with my cardiologist who strapped a ekg monitoring watch (revolutionary at the time) on me also programmed the motion sensor to beep if I haven’t moved in an hour. and beep every 3 minutes until I do. I have about a sixty second routine. no stress no pain just a walkk reach up bend over bend to each side sort a thig. The watch leaves me alone. after that. well after I’ve done 6000 steps. She gave me a stretch routine to go through before getting out of bed in the morning (maybe 90 seconds all told.)
It worked not only for stroke rehab but for the arthritis. No more HUGE PT sessions just learned skills and comfort measures from those folks. (stretches pulls massage ultrasound etc) YupI have some flares. I call em senior stupidity. The motion lotion leads me to believe I can do more than I really can and THAT is where I get in trouble (a lot) forget the motion and loose the lotion and I really get in trouble.
I exercise on my own. Walking on the treadmill is killing my feet. Like they feel broken. I want to keep walking. It says how important it is to walk if you have arthritis but it’s very discouraging to walk when it hurts so bad. Does anyone recommend specific walking shoes that feel like walking on clouds?!
The Hoka one ones are really great. Don’t buy you’re first pair online but get fitted.
A friend for them after breaking her ankle and loved them. I got them after breaking both my feet and needing surgery to repair the metatarsal. Made a huge difference. I’m on my second pair now. I did get a less cushy pair this time but they’re still excellent.
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What about PT anyway? Helpful or not what was best? This is our first attempt at a natural history poll to help research and inform members what works for others please give it a try!
- PT has been helpful to me
- PT has NOT been helpful to me
0 voters
Please Rank what made the most difference for you if PT helped:
1. Directed Exercise by PT
- 1
- 2
- 3
- 4
- 5
0 voters
2. Core strengthening
- 1
- 2
- 3
- 4
- 5
0 voters
3. PT created home program
- 1
- 2
- 3
- 4
- 5
0 voters
4. Stretches vs strengthening
- 1
- 2
- 3
- 4
- 5
0 voters
5. PT pain management procedures including massage. ultrasound, joint manipulation, tens placement etc.
- 1
- 2
- 3
- 4
- 5
0 voters
6. Simple walking at home without PT involvement
- 1
- 2
- 3
- 4
- 5
0 voters
Which of the above is the most important?
- Directed Exercise by PT
- Core strengthening
- PT created home program
- Stretches vs strengthening
- PT pain management procedures including massage. ultrasound, joint manipulation, tens placement etc.
- Simple walking at home without PT involvement
0 voters
And most Important of all:
PsA really sucks
- Yes
- No
0 voters
So by the look of that you need to go all the way to the end and vote whether PsA really sucks, then submit your vite for it to be counted?
I also saw there were 6 categories but only 5 rankings - I just selected the most important 5 and ignored the 6th, though I’m not sure if that’s what it was supposed to do.
PT works for me - but I always get a personal trainer, not a physiotherapist to do it, and I have weekly sessions building strength.
I find the right personal trainer will be far less likely to push you to do things that probably aren’t good for you because that’s what it said in the textbook 
Nah you can do 'em in order I only allowed one choice in each. Shouldn’t have gotten cute though… But you should get used to the last question… I suspect it will be in every survey LOL
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@tntlamb good questions/poll. In my situation, 1. There seems to be a very wide gap between a good physio and a useless one. 2. Cost of pt is a huge factor. Because pt seldom brings instant results, and is one more financial burden to many of us, I am guilty of doing the “one or two visits” and not seeing pt through to its full potential. This isn’t really fair to pt but costs can also be painful and add stress. I have been pondering the start of a general thread on the topic of the financial affects of PsA.
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That would be a great thread. The way I’m setting up these polls is after the discussion has developed and some themes have developed