GCA relief of symptoms?

[Chespoll]

Hi, help please.I have had a GCA flare, headaches, sore temples, total fatigue, dizzy spells and jaw pain.

Rheumatologist appt 20 Sept 2023 increased pred to 40mgs a day for 3 weeks, then reducing.

16 days later though, I still have the symptoms. Does that sound ok?

Previously I had been on 3mgs of pred for several weeks.

I was first diagnosed with PMR in March 2016 and GCA in June 2016

Thank you

[SnazzyD]

Did the increase in Pred help at all? On what did they base the diagnosis of a flare?

Have you been given a number to call such as a rheumatology nurse?

[Chespoll in reply to SnazzyD]

Thank you

The increase in pred has not helped at all. He asked about the symptons, felt my head and checked recent bloods. I did'nt know theres a number but I've got that now and have left a message with rheumatology nurse.

[DorsetLady PMRGCAuk volunteer]

16 days later though, I still have the symptoms. Does that sound ok?

No it doesn’t… 16 days should be adequate to get GCA under better control… so no consideration of reducing, in fact sound as if you require more.

As  SnazzyD asks do you have a number to contact Rheumy team? If not, then you need to speak to GP [now that’s not easy in many places] or NHS 111. As weekend is approaching… you need an answer today… if all else fails, then A&E especially if you get any issue with sight.

Please let us know how you get on….

[Chespoll in reply to DorsetLady]

Thank youNo I didnt know about the number, but I've got that now and have left a message for them to get back to me.

[DorsetLady PMRGCAuk volunteer in reply to Chespoll]

Good… let’s hope they do, pronto….

[SheffieldJane]

I would expect more relief, please contact your Rheumatologist for advice. We cannot dilly dally with GCA.

[Chespoll in reply to SheffieldJane]

Thank you, yes have left message waiting for them to get back to me.

[Doublef]

From recent experience it is not worth the risk I would increase dosage immediately

[Chespoll]

Hi - just to let you knowRheumatology nurse called back. She had spoken to consultant who advised to stay on 40mgs as symptoms were not getting worse. If symptons get worse, or vision - straight to A&E.

They would pass info to my Rheumatologist who is back on Monday, who would advise on extending or increasing the 40mg dose.

Thank you again for your help.

[DorsetLady PMRGCAuk volunteer in reply to Chespoll]

Okay…ish. Would have preferred consultant to advise a slight increase… ‘because they aren’t getting worse’ is a bit of a cop out.. hope he’s correct and you don’t have any further issues…

Please let us know how weekend and Monday goes.🌸

[Chespoll in reply to DorsetLady]

Thought the same about it being "a bit of a cop out"!Will aim for the calmest & quietist weekend.

[DorsetLady PMRGCAuk volunteer in reply to Chespoll]

😊 no watching the rugby world cup then…unless you’re not a fan!