Ankylosing Spondylitis

[MALC19]

Have not been on here for a while but do pop back every once in a while if i have any help that i can give to all.

So in May this year i was diagnosed with Acute on Chronic Sacroilitis and Ankylosing Spondylitis by Rheumatology at Royal Free Hospital after having extensive MRI,s done and huge amounts of blood tests. I have also got many other medical issues too as well as CFS and Fibromyalgia.

When i finally got diagnosis after many tests i was told about 2 websites to check out.

1 was VERSUS Arthritis and the other was NASS.co.uk

I am now having subcutaneous injections every 2 weeks (Biologic medication) Adlimumab which my wonderful Husband does for me.

I felt that i wanted to share these websites with you all as they cover Fibromyalgia as well as other medical conditions which are on an A to Z.

I am hoping it may help a lot of you and also help family and friends who really have no idea how we all suffer.

I send my strength and courage to you all and hope this information helps.

Keep warm and have a super Christmas.

[FibroLee]

Omg... I'm so happy you posted this, thank you.

I have suspected AS, had an MRI done a couple of months back now and I have been referred back to Rheumatology (just waiting for an appointment) to do further test for a definite diagnosis and to rule out other things.

How long did your diagnosis take and are the injections helping, how are you?

I am currently in bed in a great deal of pain needing to get up and get ready for work.

[MALC19 in reply to FibroLee]

So glad to hear it has helped you.

It took approx 5 years for diagnosis, it’s not an easy one as apparently in some people it doesn't show up even after MRI’s and Xrays.

I had MRI’s done Dec 2019 where it did show acute on chronic Sacroilitis (joint next to Sacrum in pelvis) but due to covid early 2020 did not get to see Rheumatology until this year March where they sent me for xrays of whole spine and pelvis. They said onset was probably in my early 20’s i am now late 50’s.

My spine is now fused in my neck (cervical spine) and bottom of spine (lumbar spine) both area’s are diseased. They said they cannot cure any of the damage that i have but the biologics should help with inflammation and possibly my Colitis too. They do blood tests every 4-6 weeks to see if there is any improvement and so far since getting the injections they said only tiny bit of improvement. Having more MRIs 29th Dec plus another Colonoscopy 23rd December for Colitis flares that haven't been good.

Nurse coming today between 9-11am to check my Husband doing injections correctly.

It was a big mess trying to pick up meds but that is a whole other story.

Biologics meds go to a funding panel first at hospital and that took 5 months.

They do help pain for approx 7-10 days and have injections every 2 weeks.

Im doing ok with it all but have a lot of damage in spine and pelvis and hips that they are talking about me having steroid injection in pelvis once they get results of MRI’s. I have an appointment in Jan booked. So we will see how things look then.

Good luck with your journey for AS diagnosis. Hope you get your answers but please remember i am not a doctor and everybody is different when it comes to diagnosis and medication but i hope my journey has given you some insight.

Wishing you well. 😊😊

[Maud-ie]

Your story mirrors mine. Symptoms in my twenties. Tons of pain and mobility problems. Diagnosed with fibromyalgia at 55 and, like you, after MRI scans, blood tests etc diagnosed with Ankylosing Spondylitis with secondary severe inflammatory arthritis, bilateral sacroilitis and tendonitis at 64. Now need two hips and one knee replaced. Self inject Benepali (Etanercept) weekly and rely on Butrans pain patches. I was told for years that 'women don't get Ankylosing Spondylitis '!! You too stay warm and well. X

[Yassytina FMA UK Volunteer]

Many thanks for a helpful post , take care of yourself x