GCA and Prednisone

[janno]

This group has been very helpful to me since I wrote that my husband was recently diagnosed with GCA and lost vision. He has been on a high dose of prednisone since it happened (80 mg for 2 wks, tapering to 70 this week) decreasing by 10 mg weekly) but does not seem to have a great deal of energy and has been trying to regain strength by walking. When he walks his thighs ache. Has anyone had any weakness or lack of energy issues such as these after starting prednisone?

[DorsetLady PMRGCAuk volunteer]

Lack of energy is all part and parcel of any autoimmune illness unfortunately - and although he’s on Pred that only controls the inflammation side of things. The underlying disease - GCA in his case - is still there chugging along.

Maybe have a look at this - explains a bit more about the illnesses we talk about on here and treating them -

healthunlocked.com/pmrgcauk...

[janno in reply to DorsetLady]

Hello DorsetLady,

After three days of emergency high-dose intravenous Prednisone he was told he would feel better, which he did regarding headache, etc. It was still our hope that continuing on the oral high dose would continue to make him feel well, which it has, but no better. We are still a few weeks away from our appointment with the rheumatologist so we can discuss more regarding this disease. I came to this site to get input from people who have gone through this and it has helped me very much in the meantime. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to janno]

It was still our hope that continuing on the oral high dose would continue to make him feel well, which it has, but no better.

As explained in my link, and by PMRpro, your husband has a serious systemic illness, and to that end it affects more than just his sight. You need give the Pred time to work, and yes although some do feel euphoric it’s a false energy, and your husband needs to learn to manage that. Just because he is on medication, life has not returned to normal.

You must also realise the shock of suddenly losing the sight in one eye, and the adjustments he has to make both mentally and physically is enormous. Something that you, no matter how much you think you can, cannot possibly understand. That also takes time.

[SnazzyD]

Yes. I don’t think it is impressed enough by medical staff just how feeble high dose can make you feel. I felt I had to do everything in slow motion because I felt so weak and jittery. Don’t forget that Pred isn’t a treatment for the GCA but a safety blanket against inflammation so the GCA will still be very much alive and kicking also. It is alarming how one can feel debatably worse on Pred than without. It isn’t forever but for now in the early days high zone it’s the new normal.

[janno in reply to SnazzyD]

Thank you so much for your response. This has helped a lot. I really appreciate the information that I have been receiving from people on this site.

[piglette]

GCA is a nasty illness to get and can be life changing. Your husband needs to look after himself as he will find he cannot carry on as he did before just because he takes steroids. Although some doctors seem to think we can run marathons once we take them. At least my consultant did.

[janno in reply to piglette]

Piglette,

Some people seem to feel like Superman when taking steroids. I wish, but did not expect that to happen. As you mentioned, things may well change for him.

[piglette in reply to janno]

I think people muddle up the strong man anabolic steroids with the cortico steroids that we all take!! Tell your husband to take it easy, he is not superman just because he is taking steroids!

[janno in reply to piglette]

Agreed, and I have impressed it upon him, he needs to take it slow.

[PMRpro Ambassador]

This is a serious systemic illness - and with most others no-one would be as surprised about how unwell they feel, Plus such high doses of pred, essential to reduce further risks from the GCA and protect the remaining sight he has, also really knock the patient flat. Patience is required and just short and gentle walks - not trying to push through to build up muscles again.

[Pippah45]

When u was first diagnosed with GCA on 60 pred I was due to stay with my sister a couple of hundred miles away. She was pushing me to drive it for some peace and quiet. I was struggling to do a quick supermarket shop locally never mind a 200 mile journey! Plus the fact I live in a very peaceful place alone! It really pays to go very slowly. This Forum has helped me see that when Rheumy pushed for fast reduction. Good luck to you both.