Still doing quite well but I hope I am not experiencing a flare.

[Mischevious]

First thing to say is thanks to all contributors, I have found this forum so helpful in coping with GCA. The advice regarding tapering Prednisolone helped me join club zero last September. I have gradually been improving since then although blood tests have shown some deficiencies. My rheumy does not want to see me any more, my GP is keeping an eye on the blood tests and I have an appointment to see him next week to see if things are returning to normal. My current concern is sore muscles in my shoulders and one deltoid as the rheumy always asked if I had any pain in my shoulders. The pain in my shoulders in very much like a stiff neck, sometimes in my neck, sometimes on top of my shoulder, sometimes at the back and not there all of the time. The deltoid pain is at the lower end of the muscle, it feels like a strained muscle but also not there all of the time. Any ideas please? A flair or just part of the adjustment after stopping Prednisolone.

[PMRpro Ambassador]

You could have other muscle problems - I get similar pains due to myofascial pain syndrome which causes hard trigger points in my shoulders. They tighten and eventually irritate nerves which cause referred pain into upper arms and neck. Here (in Italy) I was fortunate enough to have a very good pain specialist who treated it with cortisone injections and manual mobilisation of the trigger points - they are concentrations of cytokines, the same inflammatory substances that cause the pain and stiffness in PMR and the two things often go together. In the UK I used to go to a Bowen practitioner - I replied to someone else last week with the link to the thread when 4 people at least "recommended" Bowen as they had tried it after I had suggested it and it had worked for them. That thread is called "Thank you".

[raymck]

Hello from a year on Club Zero member who regrets to inform you that joint pain seems to be a lasting legacy of Preds. My GP prescribed plain old pain killers which do offer some relief. Maybe addictive but I take one most days as required. Sorry not to be more helpful but thought you are better not to get your hopes up. Paracetamol is working quite well for me but we are all different so maybe you will have to experiment? Good luck with it and hope you don't have to revert to Pred! raymck

[Hidden in reply to raymck]

raymck

3 years in Club Zero (GCA only) and as PMRpro says, try Bowen Therapy. I suffered residual pain in different places at different times. I gave it a whirl and it worked like magic. I go one in six months for a booster and will probably do so for the rest of my life.

[northants in reply to Hidden]

What is the Bowen Therapy?

[Celtic PMRGCAuk volunteer in reply to raymck]

Raymck, don't give up on the joint pain. It can take more than a year for our bodies to adjust after years on steroids. I accepted at first that my stiff and uncomfortable knees and ankles were perhaps a "lasting legacy" for me after more than 6 years with PMR and GCA. However, around a year after reaching remission and stopping steroids, I suddenly noticed that my knees and ankles had become sort of 'freed up' and I rarely have a problem with them now.

[Mischevious]

Thanks everyone for your advice and encouragement. I will try Bowen Therapy and report back on progress.