My PMR is atypical ,treatment resistant to steroids so have endured months of agony and extremely high inflammatory markers .Diagnosed Dec 24 . Almost immobilised at times with pain .Have been hospitalised for pain mgt , pneumonia ,severe dehydration with gastro as well as at first diagnosis … all since Dec 24 and narcotic analgesics no help just made me sleepy and I don’t like taking meds ! Stopped after 3weeks took Panadol regularly.
High dose steroids initially with Methotrexate Panadol No GCA on PET just bone marrow inflammation. Have tried Humira injections every 2weeks .. no relief. Finally rheumatologist suggested RINVOQ and it has given me relief from the pain and stiffness I’m still weak and my dexterity in hands not as it used to be . In saying that Ive started weights with exercise physiologist walking 5-7kms most days or pool if not walking . Prior to all this I was on no meds and very strong going to gym 3-4 times week only ever in hospital for appendix and babies ! . This has changed my life in so many ways but could be worse things .
The RINVOQ is definitely working as the two weeks I couldn’t get the drug the pain started to return … plus my markers have decreased ! At one point they were as high as 300 but think that was a few months ago when I had pneumonia . So now I’m on 3mgs Prednisone and hope to be off it soon. No methotrexate and only RINVOQ daily. The side effect for me is high cholesterol just found out it’s 9 !! Looking like statins at this point. Hope you get relief soon. It’s an awful disease .