What is Normal?

[julianne3]

Hello, I have been in remission (GCA and PMR) and off all pred for 7 months now and I am wondering how long it takes to feel a little more "normal".

I realise that I'm not likely to feel the same as I did pre GCA but the pred side effects are still evident. Brain fog has eased but bruising, red face, weak muscles and fatigue don't seem to have changed/ improved.

I have read that you start to improve after the 12 month mark but I'd love to hear of the real experience of others.

Thank you in advance

[SnazzyD]

Hello there, yes, I’d say 12 months is a reasonable period. I felt slowly better in terms of energy, stamina, muscle strength, brain etc. I’m not the same as I was but I think that may be something to do with having long Covid in 2020. This meant getting fit again had a long setback. I also have to remember I was diagnosed aged 54 and I’m now 59. I also have another condition that lays me low every 3 weeks. So I’d say don’t lose faith but keep an open mind and play the long game.

[julianne3 in reply to SnazzyD]

Thanks Snazzy thats very good advice

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD , about 12 months is a good marker…..but you must remember Pred masked all sorts of aches and pains…and of course you have aged during the Pred years - like it or not!

Not sure skin - bruising/thinning ever fully recovers, but I put that down to age.

I started Pilates whilst still on lower doses of Pred, and have continued ever since (Covid permitting) - that has helped muscles greatly, including post operation for 3 replacement joints (OA).

Now 6 years off Pred, I feel and look a lot better than I have for years….even before GCA. But then I’m not in constant pain (OA), nor stressed (late hubby chronic illness) - both of which are extremely debilitating, and I don’t think we always realise how much, until it’s gone.

Hang in there, better times are on the way.🌸

[julianne3 in reply to DorsetLady]

Thank you DorsetLady, you are so right, it has been 5 years of GCA PMR and even putting that aside the years don't miss you. Your commitment to Pilates is very impressive, especially considering there has been 3 joint replacements. After 7 months without steroids, I still feel a little too stiff to give that a go but I do work out and walk 4 kms most days.

It is lovely to hear you are doing so well 6 years down the track, and extremely encouraging so thank you again for your reply, it has given me a new sense of purpose and hope.

[DorsetLady PMRGCAuk volunteer in reply to julianne3]

Thank you - Pilates is like everything - take it slowly and build up. If you can find a teacher who has small classes or does one on one taster lessons, you can explain your conditions and she/he will never push you beyond your limits. It might be more expensive than a bigger group, but you do get more out if it. Only the other day at last week’s lesson I was remembering how I was when I started - seems a million miles away.

Take care 🌸