What's my prognosis and what will help with the pain? New here and struggling

BlueSapphires

Hi all, new to this forum. Diagnosed with SAPHO syndrome in 2017 which after further tests and specialist consultant was diagnosed with autoimmune inflammatory arthritis and ankylosing spondylitus last year. Areas affected include rib cage, sternum, neck, hips, knees and ankles - so all over basically. Over the past 6 years I have tried prednisone, steroid injections, methatrexate (couldn't tolerate side effects) and then finally found relief hydroxychlorquine for a few years until the effects wore off and I've been back to square one for nearly a year now. Started first course of biologic before Christmas but after 10 weeks it seems my pain / condition has worsened. Nurse said my body may be fighting / rejecting the meds? She's happy for me to finish the course (one more injection) then wants me to come off them for a month and see if my pain / stiffness is better or worse and then maybe i'll try something new?

My mental health can't take much more and i'm struggling on the maximum dosage of dihydrocodeine for pain which doesn't help that much. Help! what are my options etc? I'm 45 year old female who used to have a full, active life and now i'm struggling to stay positive if anything well help and what my future will look like.

Emmasknackeredjoints

Hi @BlueSapphires IA is a total nightmare! Many people do not have a clue how painful it can be. Living with no treatment is something I'm well aware of as I was left for 2 yrs before they bothered to start dmards. Which of course has lead to permanent joint damage.

Like you I'm early 40s, symptoms started at 38! Hanging on to my career with my fingernails and living predominantly housebound . Before this I was outdoors all the time so I can relate to feeling there is no end to this. I often think what's the point in going on.

What biologics are you on. Have they tested to see you if you have developed antibodies to it.

I find nortriptyline is good for bedtime and helps me sleep.

Hope you get some relief from the pain soon. Once that settles you can think clearly I feel.

Sending hugs

spuddy

Hi, I know just how you feel, I went undiagnosed for years, when I finally was I needed a hip replacement straight away, at 49 I had to give up work, I have rheumatoid, osteo arthritis and severe osteoporosis, I've lost 6 ins in height and am quite bent over now, several spine fractures and take morphine for pain relief and some days even that isn't enough as my other hip has gone but I couldn't get that one done as I had to look after my parents and my husband, then lost them all within 18 months, can't walk much at all now and wish I could do more with my grandchildren, I've tried my methotrexate tablet and injection, biological, steroids, antimalarials but they all seem to stop working eventually

Emmasknackeredjoints

Hi @spuddy that sounds awful. It's so sad to hear how people Re forced to live without the correct care we deserve

noddingtonpete

Hi @spuddy and welcome to the Community. We are friendly and supportive and hopefully that will be your experience as well.

It does sound like you've tried most things and they are not helping but don't give up. Keep hassling the rheumatology team to see what else is available. Maybe some people on here can offer some ideas.

Hope you find something soon.

Best wishes

Peter