How does it feel when in remission

[granny-b]

Hi. I think I am close to being off the steroids... and 'touch wood' have no painful symptoms.

I need to get moving more but I still suffer from extreme fatigue. Maybe it is just being that much older?

Can I expect to get my pre GCA energy back?

[PMRpro Ambassador]

What do you call "being close to off the steroids"? If you are at a low dose then it is probably more likely with GCA than with PMR.

"Can I expect to get my pre GCA energy back?" - I suppose it depends on how long you have been on pred and how fit you have been able to keep in the meantime. It is harder to regain previous levels of fitness as we get older though it is possible.

If you are down into low single figures then the fatigue is probably your adrenal function needing to catch up and the best way to do that is to be VERY slow about the final stages of the reduction.

[DorsetLady PMRGCAuk volunteer]

Hi granny-b,

If you are "close to being off steroids", then I would comment that's very quick if you were only diagnosed last year. Most of us have GCA for more than 18months are on them for a lot longer.

You don't say what dose you are on, but as PMRpro says your fatigue is probably due to your adrenal not working correctly yet. So I'll re-iterate her advice - you need to reduce slowly to give them change to wake up.

As for returning to pre GCA energy levels, it certainly doesn't happen the day after it's gone into remission! Your body needs to get back to its pre Pred days for a start, and that takes time, plus you have aged during that period anyway and have been less active so you need to build up again - slowly!

From my personal experience of GCA, and whilst not wishing to dampen your enthusiasm, I would suggest you proceed with caution. You may be one of the lucky ones whose GCA does go into remission quickly, and I hope you are, but very often they are the people that suffer from a re-occurrence.

[granny-b in reply to DorsetLady]

Hi DorsetLady and PMRpro.

Thank you for your replies. I am aware that few with GCA and PMR are able to get off the steroids and be in remission in 2 years. I am hoping that I am one of them but am prepared that it might not be me.

I have recently got down to 4 and feel good. I have some aches that I are ok for my aging body.

I still have fatigue that prevents me doing as much as I would like and muscles that have forgotten what they are there for..... a proper effort with exercises from my physio daughter would help.

There is still a slow few months to get off the steroids completely but I need to be looking to the future. I want to be building up to 'getting back to some sort of normal life'.

The steroids have been doing their job and the side effects have mostly all been managed by other meds. It hasn't been a trouble free time but I have had excellent care.

I will report back either way.

[DorsetLady PMRGCAuk volunteer in reply to granny-b]

Glad to hear you are feeling good at 4mg, but you still need to reduce slowly. The fatigue you are getting is proof that your adrenals are not back up to speed yet, and probably won't be for some time. I stopped Pred 3 months ago, and some days I still get hit by a fatigue episode. Seemingly for no apparent reason.

Some doctors think it can take a year for your body to return to normal after Pred, and I guess that depends on length of time on it, dose started and the individual themselves.

Yes you should look to the future, but don't let it become all consuming - your body has taken a battering from the GCA and the Pred, so give it time to recover.

You can do light exercise, I do Pilates and find that very good, others do Tai Chi, Yoga etc, but your muscles have deteriorated both with GCA and Pred so easy on the physio exercises! It needs to be treated differently than some rehabilitation.

Good luck.