I’ve had PsA for around 8 years, Crohns for longer but only recently was I formally diagnosed with Crohns.
My PsA seemed to be slowly spontaneously getting better since about December in a two steps forward, one step back fashion, during that time I was on / off Cimzia due to general immune malfunction and we were trying to figure out what was causing it (with the Cimzia as a possibility because I had an autoimmune reaction to Humira).
Then came the Crohns diagnosis and they decided to move me from Cimzia to Stelara, which happened last week. By then I was only getting mild PsA symptoms most days, with one stiff/sore day a week.
Since the Stelara induction dose for Crohns, the PsA has steadily improved and I have now strung together at least 5 days in a row without ANY stiffness or soreness that seems to be from PsA (I still have lower back soreness but it’s not stiff, so this is likely Crohns). In fact I feel positively flexible!
I’m still having some other weird immune malfunctions, but I think they are unrelated. I suspect we’ll get to that soon enough, I’m glad it wasn’t the Cimzia.
The jury is still out on the Crohns. I’ll update again after my MRI to let you know if the Stelara works for that too!
5 days can be a long time in PsA Land. Wonderful to hear that they’ve been good ones!
Long may this continue Jen!
You’ll have mentioned some of them at different times, but wondering what your other immune malfunctions are. General autoimmunity is rarely mentioned at my appointments tho’ a breathing nurse who had time to talk and think things through characterised me as basically just an autoimmune bod. And that then influenced some of our decisions re. treatments to try.
@Stoney thankyou, it is most definitely a great start - perhaps I’ll have to try jumping on horseback again soon,
@Poo_therapy thankyou too, it’s so lovely to be cheered on!
@Sybil yes I’m sure hoping for a continuation too - I find the idea of 8 week dosing a bit scary (like too far apart), but I hope it works
As to the immune stuff, I’m not sure all of it is autoimmune or related to PsA, but certainly there’s been quite a list - the weird rashes on my face (which I thought were a reaction to amoxycillin but wrong again), the cystitis - whether from multiple infections I couldn’t shake, or of interstitial type with unknown origin, unusual night time back pain, and the reappearance if Raynauds would be a start.
I suspect this is all going to either go away on its own if both the PsA and Crohns can be brought under control, or one or more issues will remain and turn out not to be related to the other autoimmune stuff.
I’ll update you all after my plethora of scans, at this rate I’ll be giving @Jon_sparky a run for his money - and I’m in the public system!!
