Anyone only taking Actemra

[mpl615]

I’ve been on Actemra injections over 3 seems like there is no light at the end of the tunnel. I really am against using Prednisone

[PMRpro Ambassador]

Not quite sure what "over 3" means.

On what grounds do you say there is no light at the end of the tunnel?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Over 3 years....And ditto.

[PMRpro Ambassador in reply to DorsetLady]

I assumed that tbh

[mpl615 in reply to PMRpro]

I have been on Atemra for 3 years. I function during the day but my nights are painful. Terrible shoulder, neck and arm pain.I can walk 1 mile but I struggle. Im just disgusted .

[PMRpro Ambassador in reply to mpl615]

Which really begs the question as to whether this is PMR which should respond to an IL-6 inhibitor or whether another biologic would achieve a better result. Night time pain is less typical of PMR and more associated with some forms of spondyloarthropathy - such as late onset ankylosing spondylitis. Actemra is used in inflammatory arthritis too - but only where the cause if IL-6. The anti-TNF biologics are what are used in ankylosing spondylitis and do work very well. There have been 2 or 3 people on the forums who were diagnosed with PMR - with very typical symptoms and presentation - but it turned out to be AS.

[SheffieldJane]

At the very least you may be safeguarding your eyesight, which is worth a great deal. What are your symptoms currently?You have had Pred. Was that better in terms of how you are day to day?

I am sorry you are struggling.

[mpl615 in reply to SheffieldJane]

Pain in my arms shoulders legs especially when I sit down to relax or try to sleep was on Prednisone prior to Actemera it did help but I hated being on it

[SheffieldJane in reply to mpl615]

I am still on 10 mgs of Pred. The aim is to get off completely and rely on the Actemra. Quite stiff today. I think it’s the wet weather. Diagnosed PMR in Feb 2016, GCA Feb 2020. I am with you searching for the light.

[mpl615]

Are you on an injection or monthly infusion?

[Amkoffee]

I wish I could take prednisone but I've developed severe osteoporosis due in part to taking prednisone. So in an effort to find any kind of relief I've tried a number of meds. I am currently take Actemra and it hasn't helped me one bit. I have also tried Humira, Enbrel, luflunimide and methotrexate. Nothing has work except aspirin. It's hard to believe but I get a little relief from aspirin. It does reduce my inflammation. Not nearly enough but some. For example my ESR was 67 without aspirin and 50 while taking aspirin.