Hi, it’s been a long time since I’ve written anything on here. It’s been four years since diagnosis. I’m on my fourth med.(Taltz). At four years I feel like I’ve lost the better part of me. My hands, elbows and shoulders have been affected the worst.
I’m now contemplating stopping full time work as I am in such pain that it’s become very difficult to get up to go to work. When I do make it to the office, I’m exhausted and extremely uncomfortable and in pain.
Did you have to stop working? Does this just get worse and worse? I know everyone is different but what should I expect?
Everybody’s journey is going to be different. For example, I started a biologic over 7 years ago, and I’m still on the same one. It sounds like you’ve been through a few meds, so your journey is going to look different than mine.
Are you on any other meds? Sometimes it takes a combination of meds to work, not just one med at a time. Do you take an NSAID along with the biologic and /or disease modifying med?
Then there’s the work question. Can you make accommodations to your job or your schedule?
I also take it otezla, prednisone and cymbalta.
Work is not really very accommodating so I can’t modify my schedule, hours, days, etc.
I’m on 5th med and I work presently full time at home due to Covid 19. Save for a present hip problem I’m doing OK really. But I also take Aroxia and tramadol. And I play them up and down depending how I’m doing. I see you’re allergic to NSAIDS which is a pity.
If your job is so unaccomodating - I would really look at doing something else. If you can.
I feel like saying that those joints surely are not the better part of you … I’m sure you’ve not lost the things about you that matter most. But I know what you mean, of course I do. That level of pain is a real bummer.
Don’t stop this thread, but you might be interested in another recent one - check out Nicole2017’s thread ‘When is it time to stop working?’
I’ve had to make a lot of changes due to this disease and I haven’t regretted any of them. As for the ‘does it get worse?’ question … that’s so difficult to answer, so variable from person to person. But if there are things you can reasonably do to give you a better life or indeed to lessen some of the stress that can amplify PsA … well …
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My whole body is affected but those joints are the ones that are currently the worst.
Yes unfortunately I am allergic. That makes things a bit complicated for me.
I think if I was on a biologic, otezla, a steroid, and cymbalta (which I confess U know nothing about) and life is still crap, I’d be going to my rheumy and telling them that you’re expecting to feel better than you do and asking for advice.
Obviously it partly depends on what your job is, and many of us have had to give up work, and I think most of us that have done that have found that the arthritis is easier to manage. But there are other things that you might have to deal with when not working, too - not least finances, but also sense of worth, lack of routine etc. You’ve still got to find something to fill your day.
I generally jog along (not literally!) reasonably ok with my biologic and hydroxychloroquine and some painkillers, but I’m no longer at work. I know from the occasions when I go out that I’d be in trouble if I did go back to work beyond, perhaps, a couple of half days a week.
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That should have said “I confess I know nothing about!” Sorry for any unintended insult @GReyz49!!!
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I do not know how bad it is for others I just know how bad it has gotten for me.I have PSA in my knees,hands wrists,and back.I had to retire in 2018 I got put on disability 6 months afterwards.doctors have done all they can for me.All they can do is keep me medicated,and moving around. It has been hard but God is getting me through it all. Just hang in there everyone,and never give up.!
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Ask your Rheumatologist to put you on Celebrex 200 mg daily
And Cymbalta 60 mg 1-2 times a day
Hi there, sorry to hear that you are in so much pain. Believe me I know how that feels! I have been on many medications but I am not entirely certain that any of them have actually helped a lot. My knees and my shoulders have been replaced and although not perfect they feel considerably better than before replacement. The facet joints in my lower back are now deteriorating and the pain when standing or walking can be intolerable. I can not do housework or enjoy a walk and even cooking I have to set down every 10min or so.
The fatigue that goes along with PSA is also distressing . So I do feel your pain. I have an appointment to see a pain specialist and hope to be a good candidate for ablation therapy. This is where they burn the nerve endings at the pain site so that the message can not get through to the brain. Keeping fingers crossed!
As for working I sold my business about 10yrs ago as I could not do it anymore. I am 74yrs. Old.
Good luck to you and I wish you happier days!
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I had to retire about 3 years after diagnosis for the same reasons you have. It helped. I have more energy to be engaged with my family. I can also rest when I need to, I have a me place in our house and can hibernate there when I get severe flares without feeling guilty. I started therapy to learn to not feel guilty when I feel bad and to take care of me. Hope this helps.
@Bern I think my working days will be ending much sooner than later. I understand what you mean about the guilt. I have quite a bit of those feelings going on right now. Thanks for your reply.