Spondyloarthropathy and Rheumy nurse appointment

bailey27

Hi,
Had my appointment with the Rheumatology nurse monday and it went well. I posted a message last week explainng I had been worried as I was expecting to see a consultant and was worried that I wouldnt get answers.
I saw the nurse and she was absolutely marvellous. She spent time talking to me and didnt rush me at all when I had questions to ask. Mid way through the appointment she called in the consultant too so if anything I had the benefit of 2 fantastic people. I didnt really get anymore answers but at least things are moving along int he right direction.
I have been on sulphasalazine 2 tabs twice day and have been taking 25mg pred, celecoxib, ferrous sulphate(iron) and omeprazole. The last 5-6 weeks over xmas and new year have been horrible as I have had a flare up that just will not go away.
They upped my sulphasalazine to 3 twice a day and have to try and get my steroids down when possible.
I explained about the chest pains and she said with spondyloarthropathy it can be inflammation int he throacic spine, sternum and ribs which is causing the pain so they have also requested another MRI which will show whether it has spread into the thoracic spine.
Yes terday and today cut to 20mg of pred and am really feeling it and have needed to take more painkillers than ever although I am determined to push through it and see if it will settle although it is agony.
The nurse told me to cut to 20mg and it needed increase by 1mg a day if it gets too bad. Surely it would be better to cut by 1mg a day so 24mg from 25mg and so on. hhmmmm, i will give it another day or two but will rpobably go back up and work my way back down as that has seemed to work better for me in the past.

Anyone out there with Spondylarhtropathy? How has it progressed for you? Is it common for it to spread from sacro joint to throacic in the space of just 8-9 months??

topgirl

Glad you are at last getting some positive treatment
Sulfasalazine is really good but it took me a good 6 months before i saw the benefits...
My Rumy nurse is worth her weight in gold
Kay
xxx

Wonkylegs

HI again
I'm glad that your appointment was a positive experience as that really does help you to feel that you can trust the people caring for you.

I wish you well with the meds changes .... I know that for me the sulphasalazine had to be in the higher doses before it worked for me. Sorry i can't help wtih the steroids as I haven't taken them like you have.

good luck
Wonky

bailey27

Thanks, yes she was absolutely fabulous.
I had a horrible thought that I wouldnt get answers and get naywhere and was imagining coming out of the appointment in tears, as I have done many times. Instead I was almost crying because she as so nice and understanding.