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Arthritis Action
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Everything hurts - almost.

This is my first time posting here. I have posted on the PMR board which was very helpful. I have been convinced I have it in addition to RA because of chronic shoulder pain, particularly the right one. Up until 2 years ago I had been pain free on Enbrel followed by Remicade and then it all went pear-shaped. During this time I have been on Zeljanz, Orencia - now Actemra for the past 4 months plus 25mgs of Methotrexate. There's been the Prednisolone rollercoaster - currently at 5mgs daily and of course the OTC's, paracetamol and ibuprofen - haven't tried co-codamol yet but will be asking for it to get a decent night's sleep. Fortunately, we have an adjustable bed so I sleep completely upright which does help. I have an MRI in two weeks, then in January I think the doctor will abandon Actemra and start me on Rutiximab. Being seropositive I am hopeful. I would appreciate hearing from anyone who is or has been in a similar position . At this point I don't know what is going on but I should be thankful my spine and hips are okay - ish. I can honestly say I have never experienced pain, stiffness and disability like this. If I could just go up a bit on the prednisolone I know I would be so much better but I am going to have to wait a bit longer.

3 Replies

Hi , I can empathise with you. I think unless you have this pain and stiffness , it's impossible to understand how hard it can be. Are you on Amitriptyline? Only it's the only way I can get a good night's sleep. I set a reminder on my phone for 6pm every evening. I take 3 tablets and I an asleep by 10.30 at the latest. Haven't been able to do that for years . I have also given up on the pred and ibuprofen. The side effects from the pred were out weighing the results and ibuprofen doesn't help me at all. I take codeine and paracetamol for the pain . Hope you can get some relief soon x


Thanks for that. No, haven't tried Amitriptyline, I remember being on it years ago for bladder spasms, fortunately they went away. Surprisingly, I'm not having a bad day today, just hope it lasts. I do find the less I do the better I am but I can't just sit and do nothing for the rest of my life. I am an optimistic person so.... we'll see.


Hi just wandering if anyone has high levels of Creatine Kinase in your muscles ! I am in very similar position extreme pain and stiffness - high CK levels , never known pain like this !


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