Hi All
Haven’t posted for a while as I’ve been toddling along after another steroid shot in the butt, but it’s wearing off just as I’m due another one! New rheumy not keen to start another biologic yet due to immune system issues and I think probably that I’m running out of options.
Now all the symptoms are coming back something I’ve meant to ask is do others get really blurry vision? Mines gotten really bad since all the joint pain etc has returned and I have my eyes tested regularly.
I hope you guys are getting the treatment you need and finding ways to cope. Miserable old disease and miserable weather in the UK too which I’m sure doesn’t help.
I get blurry vision and it was a thing off and on pre diagnosis. Dry eyes? Combine that with flare…I guess I just chalked it up to inflammation. No red eyes or anything, but bad at remembering to put lubricating eye drops in regularly.
Sorry to hear the weather gets you, winters I guess.
As far as meds go, been on Rinvoq almost 2 years and just had to change rheumatologists, he added methotrexate “to help the Rinvoq work longer” and I pretty much immediately got shingles…so yeah, double edged sword that. Thank goodness I had been vaccinated but the antivirals made a little nasty.
Damned if you do, damned if you don’t.
I’ve had all sorts of issues with my eyes, some diagnosed. Dry eye/sicca syndrome. Inflammation not specified.
I’ve had cataract surgery before age 50. Possible optic berries. Posterior vitreous detachment in one eye.
And then some randomness that causes extremely blurry vision in one eye for hours but never all day.
Keep on top of it. Uveitis is one of the eye problems associated with PsA and the posterior (I think) is harder to diagnose
PsA can badly affect eyes hence why in the UK we are told to have yearly eye tests. Get an appt with your optician and take it from there. Never delay when your eyes feel funny if you have PsA. It can turn out to be exceptionally serious sadly.
Also steroid use vastly increases the chance of early cataracts too.
1 Like
Oh northernelf sorry to hear about your shingles woes. Consents had that effect on me. You can’t win can you?
Stoney sounds as though you’ve been through the mill with your eyes and everything else. You’re very long suffering and brave. Good on you
And Poo thanks for the advice. My optician did say he could see the start of cataracts. These steroid shots are all very well but serious side effects. I shall have a discussion at clinic tomorrow and try and get the truth behind them holding off more Biologics.
What biologics have you tried? You may have mentioned this previously so forgive me as I can’t remember.
Have they mentioned JAK inhibitors? Have they mentioned Bimzelx the new kid on the block of biologics in the UK? Unlike Cosentyx and Talz (have you tried them too?) Bimzelx hits all of IL17 not just IL17a? Assuming you have no IBD’s alongside PsA as many people do (me included as I have Crohn’s too) it’s actually the biologic of choice in the UK from the expert PsA rheumys presently when their patients have had Adaluminab (Humira) and Etanercept (Enbrel) fail them. Hopefully you’ve tried both of them too?
When Cosentyx finally failed me after four and a half glorious years, I obviously couldn’t try Bimzelx given the Crohn’s issue but I can try Tremfya used extensively for PsA and psoriasis and HS. I started it in December and I’m presently re-learning the art of patience as it’s first review for the smallest of improvements is 24 weeks and it doesn’t reach full efficacy for two years. But I’m hopefully given its positive data. Have you tried that either? What about Cimzia, Simponi, Stelara? and I’m sure I’m forgetting others.
We thankfully have a lot of PsA treatments approved in the UK all of the above plus a few I most likely have forgotten and all of them are all fully approved for use in the UK for PsA, psoriasis and even some other autoimmune diseases like HS or an IBD. For example Tremfya as well as treating PsA, psoriasis and HS is now just recently approved for the treatment of Ulcerative Colitis and is undergoing trials for Crohns too.
So it’s really hard to believe you’re ‘out of options’ like you feel presently. Sadly some general rheumy pratices with little or no experience of treating PsA apparently think a patient can only try 3 biologics and that’s their lot. That’s a grossy wrong approach and a complaint to PALS explaining NICE protocols on treating PsA usually rights it with a reprimand to the stupid rheumy dept as well.
But get off those steroids and onto some PsA actual treatment as fast as you can. It’s the only way to go.