Suspected spondyloarthropathy, confirmed sacroilitis

[Petart44]

Has anybody here heard of these before or have the same conditions?

I`ve just received a letter from orthopaedics advising me of the above condition and it has thrown me. I`m a woman aged 44 and believe that this rare form of arthritis normally only appears in men between teen years and upwards. I`m not entirely sure what to think or do right now. Should I be worried, is this going to get worse? I`ve had issues with my back since I was a teenager, these past 11 months I have been in near enough constant pain. I have also been diagnosed with Autoimmune Hepatitis in the past few weeks which is attacking my liver and joints so have to be very careful what pain meds I take. Any advice would be very much appreciated

[weathervane]

Hi Petart , i have sacroilitis it flares up every so often, it was very severe a couple of years ago so i had a guided steroid injection which made a big difference.

[Petart44]

Thank you for your reply. I have been referred to Rheumatology, just waiting for an appointment to be arranged now so I can ask my questions. My head is all over the place right now and I`m not thinking straight.

[Petart44]

Thank you

[Red_robins]

Hello, I'm 31 and female- I too was diagnosed with both spondyloarthropothy and sacroilitis about 18 months ago. Apparently it is likely to be secondary to my chrons disease. It has taken me by surprise too and I too feel scared at times about the impact of the conditions/the future etc. However, I've learnt that stress doesn't help, it only makes symptoms worse. Easier said than done though I know! I'm on medication and struggling with flares but now being considered for anti-tnf treatment (waiting for updates and seems to be a long process). Some people are apparently able to manage their symptoms with physiotherapy and exercise alone. Try not to worry until you have all the details - hopefully you won't have to wait too long to see the Rheumatologist (I've found mine super helpful). In the meantime why don't you make an appointment with your gp - write down your concerns and any questions so you get the most out of the appointment. Take care and good luck xx

[Petart44 in reply to Red_robins]

Thank you for your reply. I`m still scared as hell about what the future holds for me now but I have calmed down a bit since yesterday. Read up on it more this morning with a clearer head and have a little bit more understanding of it I think, still got loads of questions I need answered but I`ll speak to rheumatology when I get an appointment, hopefully soon and see were I go from there. Thank you for the advice though, it is very much appreciated 🙂

[Red_robins in reply to Petart44]

You are more than welcome. I felt exactly the same and still feel frustrated that I have the conditions, hoping that one day they'll magically disappear but I have some level of acceptance now. We all have our own journey and we all have our own ways of coping but I definitely think it helps to talk to others who are going through a similarly time. They just get it on a level that people who aren't familiar with the conditions don't unfortunately. Glad you're feeling a bit better and good luck with everything. Take care x

[Petart44 in reply to Red_robins]

Thank you, still need to get answers but hopefully won`t have to wait too much longer. Thank you also for the support and information x

[Sarahg62]

After 40 years of having RA, it has just been confirmed I have spondyloarthropathy. Again had spinal problems for years resulting in fusions in my neck and more recently in my SI joints. I am now 58. It has taken them this long to properly diagnose it 🤷‍♀️

[Knip in reply to Sarahg62]

Tough journey Sarah62. Hope you get some relief now that you have been diagnosed. Take care.

[Sarahg62 in reply to Knip]

It’s a fun life having a long term illness 🙄

[Petart44 in reply to Sarahg62]

Wow, I can imagine that it has been so frustrating for you going all this time with your issues and only now get answers. Hope things get better for you after your diagnosis

[Sarahg62 in reply to Petart44]

Thank you. I will contact my Rheumy doc for advice, as I was advised if I went on Humira I wouldn’t get any more uveitis flare ups.

[Sarahg62]

Things have improved drastically over the years. The 80s was very far removed in diagnosing different types of RA compared to now. My fault for being ill 40 years ago lol 🤣🤣

[lupus_01]

I have inflammatory spondyloarthritis. Finally got diagnosed late 40's after years of being fobbed off by several doctors. Reading articles for women it tends to flare up more as you hit perimenapause/menopause. Something to do with estrogen levels affecting the inflammation. I was lucky as i decided to take myself out of the ratrace and retire. Best thing i ever did. Stress and sitting at a desk all day was killing me.