Hi I was diagnosed with both of these conditions AS first then with RA in peripheral joints, really bad elbow and had steroid injections in it and hip. Im now taking 25mg Methotrexate injections as I started on 15mg tablets about 18 months ago which didn't work much. given current dose about 5 months since. My question that I would ask Rheumatology if anyone would answer the blinking phone is should I be taking an additional drug for the AS because I seem to remember the consultant saying Methotrexate didn't work for AS but to get the RA under control? This last month my right shoulder blade and down my arm to the side of my hand is aching. Would that be AS related? How do you get another appointment with Rheumatologist, they had been really good initially but im now on shared care with GP practice and they appear to know nothing. Sorry for long rant but feel like the AS is not controlled.
Thanks for reading.
Andrea
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Amb1xkr
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I have ankylosing spondylitis as well as peripheral symptoms. My peripheral symptoms are due to my AS though. I’ve had ultrasounds and MRIs of shoulders, feet and knees which all confirm it’s due to inflamed tendons. It has caused both knee caps and 2 toes on my left foot to subluxate. I take 25mg MTX for the peripheral symptoms, and a biologic injection for the spinal symptoms.
Normally for AS you have to try 2 nsaids and fail before progressing to a dmard or biologic. To meet the criteria for a biologic your mri needs to show significant active inflammation. I had fusion of my SI joints and rib cage, and had already been taking nsaids plus steroids, yet still had a lot of inflammation, so was quickly moved to biologic. If you haven’t had an mri recently they would probably red to repeat that to secure funding. Biologics cost around £10,000-12,000 per person, so the criteria is strict. You would also need particular blood tests and chest X-ray. It’s important to know biologics aren’t painkillers, but reduce some of the inflammation and can thereby give relief. However it won’t help with areas already damaged.
My shoulder blades give me a lot of pain, due to tendons calcifying and causing shortening. I take a muscle relaxant which helps a bit. I also do daily stretches, there are many on the Nass site. I find the cat/ cow yoga stretch very good for the shoulder blades. Hope you get some relief.
thank you so much for explaining all of that. I had last MRIs about a year ago and have damage to my right hip and also something showed on my spine, however, I wasn’t clued up at the time so didn’t absorb/understand the prognosis. It’s not easy to speak to Rheumatology in sheffield as no one answers the phone. You are all so knowledgeable on here it’s a comfort.
This is from National Axial Spondyloarthritis Society if it helps
DMARDs are only recommended for people with axial SpA where there is peripheral involvement. This means that DMARDs might help reduce symptoms in your hips, knees, ankles or arms. There is no evidence that DMARDs such as methotrexate and sulfasalazine will help with axial SpA symptoms in the spine and neck. nass.co.uk/managing-my-as/m...
thanks great link helping me to navigate my way with this. I’ve maybe been in denial but now realise it’s not going away! Good to know you’re all out there with experience and advice. My husband has buried his head that far in the sand I can barely see him. Lol.
You’re welcome. Forgot in my reply but shared care isn’t literal as such but usually entails your GP Practice taking over prescribing your rheumatology meds, once they’re initiated by your Rheumy. Also, drug monitoring bloods are often included in shared care, it is at my Practice.
Get digging your husband out!
I’d email your Rheumatology Dept and ask for an Emergency Appt. ‘Shared-care’ means blood monitoring really. Be assertive.
I agree completely. Shared care is as you say, just taking responsibility for the blood monitoring and prescribing of the dmard. If we don’t get in touch with rheumatology when we’re struggling, they assume we’re coping.
Agree absolutely with other comments. Don’t take no for an answer you have to fight sometimes to be heard and it sounds as though that time has come. I’m not one to complain normally either but if you’re suffering it gets to a point where you’ll need to be slightly assertive and just a little apologetic and creep if necessary before you get to the stage where you can’t bare it and don’t have the fight in you. Been there done that and sometimes now I’m ever so nicely a cow if I’m at that point.
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