What is a PMR and GCA flare up symptoms? I was on prednisone X4 month, on Actemra shots weeklynow,my shoulder is painful, my ear feel stuffy, have knee pain, my Rheumatologist sees me every 3 months, when I told her about my knee pain she referred me to an orthopedic, when I told her about my ear she referred me to an Ent specialist, she never explained the disease, and what to expect, I live in a small town in Florida, and there are few choices regarding specialist, I am seriously considering going to Mayo Clinic or John Hopkins.
flare: What is a PMR and GCA flare up symptoms? I... - PMRGCAuk
flare
I think you can find a lot about PMR and GCA on the internet. Probably as much, if not more, than some doctors could tell you.
A flare of either illness is usually similar to the symptoms you had pre diagnosis.
See this from charity’s website -
What dose of pred are you on? And how long have you been on Actemra?
the Rheumatologist had me on prednisone for 4 month, took my last prednisone Feb 16, have been on Actemra since 12-16-23, I just feel she should be more involved with my care in regards to my disease.
Actemra only works for half of patients to get them entirely off pred. This is because GCA/PMR inflammation can be caused by 3 different mechanisms and Actemra only works on one of them, the production of the IL-6 cytokine. It is the most common and predominant mechanism for all patients and for half, appears to be the only one. But for the other half of patients the other 2 play a significant role, The time that has passed since you stopped the pred and the vague symptoms you describe appearing is quite typical of unmanaged GCA inflammation mounting up to a level that causes symptoms - did you have similar symptoms before diagnosis? Ears can be part of GCA, shoulder and knee symptoms are seen in PMR and PMR is also a potential symptom of GCA.
By the way, when you reply to a particular comment it helps a lot if you click on Reply that appears as part of that comment so the person gets a direct notification.
thank you for all your help.
careful on that John Hopkins, do you research.
I was on prednisone at the same time as the
Actemra and believe it was an added extra to help reduction so I would think you should still be on Pred as well -best of luck !