@Sybil posted this response on this thread, but it doesn’t seem to be showing up (I got it in an email) so I will copy and paste it here:
I’m not sure about tantrums. On the rare occasions I lose it I don’t have an ‘Off’ button. I believe I’m a bit Irish too, quite a lot maybe, but I don’t think that’s the reason lol.
Nearly 20 years ago my husband was wrongly diagnosed with an inoperable brain tumour following a stroke at the wheel of his car. It was all very confusing plus we were rather immature for 30 somethings I guess, disinterested in medical stuff and recently married. We took little notice of anything.
As soon as he’d recovered enough, off we went on holiday with strict instructions from doctors that I had to do all the driving. Whilst being forced by me to traipse round IKEA he had another stroke and became nearly blind.
He told me to drive him back to the hospital in our home town a couple of hundred miles away ASAP. Once there, he parked his backside in the relevant department and refused to budge until he’d had a brain scan. Possibly that was the day we grew up, well he did anyway. He was an awesomely polite squatter, prepared to sit there forever.
He got what he wanted and his obstinacy led to a correct dx. I’m not like him but what I took from that incident is that it’s vital to identify what we want and need from the health service and then to pursue that end with dogged determination. With PsA that’s a tough call. PsA symptoms and their impact on us aren’t as clear cut as sudden blindness. I think the beauty of this site though is that it helps us work out what we can reasonably expect. I reckon nearly 2 years of NSAIDs and DMARDs is enough Janson. If the protocols require another couple of months then so be it, but in your shoes I’d want to know that biologics are definitely the next step and I’d want to know which biologic was being considered too. Knowing that a definite plan of action is in place is therapeutic in itself.
Gosh, @Sybil did your husband recover his vision? I ask because I had a small stroke a couple of years ago that has left me without approx 1/4 of my visual field (initailly I lost 1/2 my visual field)… I guess I was lucky in the sense that it was only my vision that was affected (but that means I am no longer able to drive)… It was disorienting enough at age 54, I cannot imagine how that would be for someone who was only 30 something.
Yes, I have got to the point where I feel I have had enough of this wait and see game… my next rheumy appt is in mid March, I think I will be standing my ground a little stronger than I have to date… in the meantime if I have any new issues crop up I will definitely be contacting the rheumy nurse for advice, at least that way things should get recorded too. I tend to feel there has been a bit of mucking around in my case due to having seen different rheumy’s each time too, locums etc, perhaps now having the registrar sort of taking over my case I may get more of a continuum of care… I think there has been a bit of question over whether or not this was inflammatory arthritis, let alone PsA, but I think that was resolved at my last appt at least to a definite inflammatory arthritis.
I am aware that the first biologic may not prove to work either… but am pretty keen to at least give it a try.