GCA query

[Seanfleming25]

Hi just joined and looking for support with GCA. I’m now feeling better on steroids - waiting to see Consultant and scan . Just wondering can I reduce the steroids now I’m feeling better?

[cycli]

Hello Seanfleming25. Without knowing when diagnosed or what dose you are on and for how long it would be impossible to answer. The fact you are feeling good is brilliant but only a result of the prednisolone getting on with controlling inflammation. It make one feel normal again but is a snare. People often think they can go back to what they did before and don't need so much. Please give a more detailed status and better advice can be offered. Until then stay on your present dose or until your rheumatologist advises. Your sight is still at risk.

[PMRpro Ambassador]

Hi and welcome! DorsetLady will be along shortly with her welcome post on GCA and advice.

Please could you provide us with more info - like when diagnosed and symptoms, dose of pred you were started on and how long you have been on it and the instructions your doctor has given you. Then we can help you so much better,

But in the interim, no, do not reduce your steroid dose until you have medical advice to do so. Just because you feel better does not mean that the pred has cured anything - it is a management strategy to keep the inflammation under control and reduce the risk of long term damage to your blood vessels and vision. You WILL reduce the dose, but it must be done in a controlled way to avoid a flaring up of the inflammation and return of the symptoms and risk to your sight,

Sorry I can't write more but it is way past my bedtime here in Italy!!

[Hidden]

Welcome 🤗x

[DorsetLady PMRGCAuk volunteer]

Welcome,

As mentioned, info post attached..please read it and keep for future reference. You won’t take it all in on first read.

No you shouldn’t be reducing by yourself. You may be feeling better, but that’s just because steroids have stopped the pain, doesn’t mean GCA has gone away. Tapering needs to be done in a sensible manner and under medical direction. You have a serious condition and it requires to be managed, if it isn’t you risk a flare.

healthunlocked.com/pmrgcauk...

Please let us know how you get on once you’ve seen consultant, and more info in your profile/bio would be helpful.

[Seanfleming25 in reply to DorsetLady]

Thank you for this. I’m seeing consultant on Friday so will let you know what they suggest.

[cycli in reply to Seanfleming25]

how did the consultation go on friday

[Angelsmummy]

Morning Seanfleming,from a fellow GCAer with sight loss through it.Glad you are feeling better,but as the WISE ONES have said on here,please do not be in a rush to taper,by god you will regret it!I had 2 flares from bad advice given by rheumatologists in the early days.The mantra on here is DEAD SLOW !Eyes are so precious, and believe me losing an eye is no fun.I have learnt to be firm with my medical team,only having the strength to stand up for myself because of what I have learnt on this wonderful forum.I am 22 months in on my journey and am at 5 and 1/2 mg reducing to 5 mg over a 7 week tapering plan devised by Dorset Lady,a fellow GCAer with sight loss.You will get every bit of help you can ever want on here,so much info,a sympathetic ear if you are having a bad day and much more .Keep in contact with the forum,you have a long journey ahead of you,but it will be made much easier here!Good luck to you,xx🌼🌼😜