Diagnosed with GCA

[CavalierKC3]

Diagnoseed aug 2022. Started on 50 mg Prednisolone now down to 15mg. Been told steroid has caused diabetes & high cholesterol so now on meds for them. I thought I would feel better when on lower doses of steroid but I don’t seem to. Feel very weepy, but don’t really have anything to cry about. Can’t get myself motivated to do much work or exercise. Are other people like this

[DorsetLady PMRGCAuk volunteer]

Would say maybe you have reduced too quickly 50-15mg within 4months is a lot faster than most achieve -certainly successfully.

High GCA doses very often give a feeling of well-being -and as you reduce that steroid induced “high” dissipates.

Plus you may be now realising with the onset in diabetes and higher cholesterol (which may well improve once you are at lower doses) that this is a long term issue and not as quick as maybe you were led to believe.

It may or it may not be a comfort to you, but you aren’t the first to feel like this, and you certainly don’t be the last.

But you will get through it, and come out the other end - take my word for it! 🌸

Nit sure if you’ve read this - maybe with a look -

healthunlocked.com/pmrgcauk...

—and this might prove things do get better -.

healthunlocked.com/pmrgcauk...

[CavalierKC3 in reply to DorsetLady]

My Rheumatologist is at NORFOLK & Norwich hospital & that is how he reduces the steroids

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

Okay ….

[SheffieldJane]

I wish doctors knew just how hard this disease is, how painful and debilitating. I am sorry you are feeling low. There is a lot to grieve for - your good health, the high blood sugar, the cholesterol. The sheer loneliness and isolation of these diseases even amongst our nearest and dearest. Nobody understands unless they’ve experienced it, not even doctors. I am lucky, mine tries and trusts me to taper at a pace I feel comfortable with. I am glad you’ve found us. This is a supportive, friendly and informative website. We have all felt everything you are feeling. Stick with us we will see each other through this. Now I’ll get back to hiding my general bah humbug! Fake it until you make it. Wishing you peace, comfort and distraction. 🕊

[PMRpro Ambassador in reply to SheffieldJane]

I can't even fake it ...

[PMRpro Ambassador]

You do really have something to be weepy about - losing your good health, being on pred and then not feeling better as you expected as you reduce is all just as much a bereavement as what you usually think of. Don't tell me - you are under Chetan Mukhtyar? He has this thing about reductions that quite often make his patients feel fairly ropey.

I fear he is very set in his ways so can't help much there - but maybe you CAN access talking therapy through your GP? But we are hear to listen to a rant and try to help you through it.