Thank you for all you replies. I have had GCA for over 4yrs now and have never spoken to anyone who has this illness before.

[5lupins]

I am now taking 3mg of steroid (tapering from 60mg). And 20mg of methotrexate. I try to walk every day and be busy but the aching and tiredness exhausting. Take care everyone.

[Celtic PMRGCAuk volunteer]

5lupins, I can understand the relief of being at 3mgs after 4 years with GCA, but the "aching, tiredness and exhaustion" to which you refer does mean that things are not completely under control yet so do try not to be too "busy" for a while longer!

[tomasina]

5lupins,

I agree with Celtic, you have come a long way, but take care of yourself. I am three and a half years down the line with one flare, but have got down to 4mgs Prednisolone a day. I still have days when I am exhausted, but make a point of getting to bed early and have eight hours sleep - so essential. I, perhaps, could do more exercise but I never seem to stop pottering around.

Good luck.

Tomasina x

[raymck]

Hi 5lupins, Don't want to worry you too much but after nearly 2 yrs tapering to zero steroids (pred) there is still a legacy of the pain to contend with I find. Everyone will have their own level of course, so wish you well and hope you will be one of those who suffer less. Regards, raymck

[mickt]

Hi 5 lupins im a year into Gca pmr and poss hughes APS,im on 30mg pred daily ,25mg methotrexate injection weekly,Ive got to go and have 6 more infusions of cyclophosphamide,and got to start warfarin.The lowest steroid ive been on is 10-15 mg pred daily ,ive had 3 flares in a year all affecting the old lamp oil.Im fortunate to have a good team of medics on my case.Hope things improve for you.I did hr in garden today I kept having to rest between spurts ,its a frustrating illness .All the best mickt.

[5lupins]

Love all your help . It seems everyone has different symptons and drug regime. I will plod on to zero hopefully, maybe I'll be clear by the time I am seventy. Maybe 70 is the new 50! Time will tell. Bye.