flare

[Cubanurse49]

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.

[piglette]

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.

[DorsetLady PMRGCAuk volunteer]

A flare of either illness is usually similar to the symptoms you had pre diagnosis.

See this from charity’s website -

pmrgca.org.uk/information-a...

pmrgca.org.uk/information-a...

[PMRpro Ambassador]

What dose of pred are you on? And how long have you been on Actemra?

[Cubanurse49]

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.

[PMRpro Ambassador in reply to Cubanurse49]

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.

[Cubanurse49]

thank you for all your help.

[Unfortunate1]

careful on that John Hopkins, do you research.

[springeramber]

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 !

[PMRpro Ambassador in reply to springeramber]

No, some patients are able to manage on Actemra alone, about half. The other half need some pred to avoid a return of symptoms.