I’ve been diagnosed this year with PsA (and have started getting rashes - but haven’t been diagnosed with the skin variety yet) after contracting Covid in December 2020. Instead of slowly progressing levels of pain, rash and discomfort in flare ups - I am experiencing continuous symptoms. My Dr is still looking for a medicine to work. Methotrexate gave me suicidal mood swings… So we are on to biologics next week.
My questions:
Has anyone here experienced continuous PsA and does is stop after a while and revert to flare-ups?
I feel like my Dr isn’t taking me seriously. How do you track down the right one for you?
I’m really new to this, do you have any tips in dealing with work, friends, and family? I don’t think they understand what this is like.
Hi Heather! I had psoriatic arthritis prior to contracting covid in November. But after I finished up the prednisone for my lung problems, I had the worst flare ever! Pretty much every joint, bad fatigue, etc. It’s actually prompted a change to a new biologic, that I just started two weeks ago. I’m actually off the prednisone completely, and while it’s nowhere near perfect yet, it’s definitely better.
My normal pattern is low level disease activity and fatigue most of the time. Still, a thousand times better than I got stabilized on meds in the first place. I would encourage you to look for a second opinion, and possibly switch. You should have a certain level of confidence and comfort. I’ve done well personally with my rheumatologist. But when my husband first saw one, he didn’t see mine. I made him switch! I went with him to his first appointment and the doctor was just awful.
When PsA first starts with a bit of a bang as it has for you - usually called sudden onset PsA, it truly does feel like this horrendous pain and incapacity will never end. But it does when you find the right med. But finding the right med can take time. Something like methotrexate (mxt) can take 3 to 6 to 9 months to work at all. It seems like it didn’t like you much though and neither did it like me.
As you are in the USA you progress faster to biologics than we do here in the UK. We must at least try another DMARD first. Mine was sulfasalazine and I was amazed how well it worked for me. That gave me some faith that our meds can and do work. But it took 6 months to work for me.
Eventually my disease progression over took its usefulness and then I progressed to biologics. The first two didn’t work for me either so I had spent the better part of a year and a bit trying them. You have to take a long time trying our meds because they can take time to really get going. And rushing through them doesn’t actually help you in the long run sadly. You’ll be glad to know that my third biologic Cosentyx does work. But again it took 8 months to truly get going. Biologics don’t reach their full efficacy for a year really.
So there is no quick fix to this disease sadly. They can’t tell which med will work for each of us until we try them. You’re only on month 4 of getting PsA.
Why hasn’t your doctor given you a steroid taper just now? That would help ease your symptoms a little whilst he or she works out what to try next.
The reason you’ve now got PsA is because your immune system has become abnormal and is needlessly attacking you causing inflammation, pain, and incapacity. And I bet you’re really totally exhausted too. Our meds work by tinkering with our immune system to get it to behave more normally. It’s a chronic disease, it can wax and wane but it rarely goes away and once you find a med that likes you you stay taking that med too.
In the UK we have a great organisation called PAPAA google it it will tell you so much about PsA and what it does and why. It’s an excellent resource frankly. A good way to explain to friends and family is also to google the Spoon Theory, it describes beautifully how difficult having a chronic disease is on a daily basis.
If you’re not happy with your doctor please change to another. You will be having an ongoing relationship with this doctor so you need to be with one you trust and who listens to you. You need to ensure your doctor is a specialist in PsA.
Presently you’re in what’s called ‘the gap’ on this forum namely waiting to find a med that works for you. It’s scary and mind boggling frankly but hand on heart it can and does get much better once you find your med.