I have been diganosed with giant cell artries and been put on 40mg steroids but feel tired all the time and not with it does it improve

[averis]

giant cell artries

[Celtic PMRGCAuk volunteer]

Hello averis

I do so empathise with how you are feeling at the moment but following my experience you will be cheered to hear that it definitely does improve as you reduce the steroid dose. However, don't be in a hurry to reduce from this 40mg starting dose - it will take a few weeks for this dose to do its job of reducing the inflammation. I used to be amazed at how suddenly the fatigue would strike and there is no choice but to give in to it and rest as much as you can in these early days. Likewise with feeling "not with it" - I used to refer to it as my woolly head. I found it impossible to concentrate on anything or remember anything. This will all pass but meanwhile you have to give yourself lots of tlc. With very best wishes.

[averis in reply to Celtic]

thank you for your help it was nice to hear from you regarding this all the best to you

[Whittlesey]

I agree with much of what Celtic says. I also, have been diagnosed with GCA, 2012. At first I was on 60 mgs of prednisone at home. I began to feel the fatigue. It was lowered and lowered and I began to feel tremendous fatigue. My rheumatologist at that time, said I was suffering with Cushingnoid symptoms from the methylprednisone. I was on 10 mgs a day and within a few months reduced to 5mgs per day with methetextrate, 10 mgs per week. Apparently the adrenals can shut down, when the large amount of prednisone are in your blood. They get the "signals" that no cortisol is needed from them and they shut down and do not produce cortisol. When the cortisol from the medrol is lowered quite a bit, the adrenals do not start to produce right away. The major organs, kidney, liver, etc., are not getting the cortisol they need. We feel exhausted.

I believe Celtic's advice is good, here. give yourself tlc while your adrenals begin to function again. I have been talking at length with my new rheumatologist, internist and physician's assistance about how the medrol causes this to happen, alternatives and how to get the adrenals functioning again. When my earlier rheumatologist, a man in his 70's suggested, that this just may be a result of the GCA and current treatment, Cushing's syndrome, which leads to Addison's disease (meaning there is no function from the adrenals and you take the artificial cortisol from prednisone for the rest of your life), I switched to a younger, more aware rheumatologist, who is working with me that this not happen. I am 62 years old. I am currently at the 5mgs. Looking to lower it and using the anti inflammatory diet, and herbal supplements, fish oil, black cohosh. I am looking into trials for biologics which reduce the inflammation and stop the growth of killer t cells, one of the effects of the enlarged macrophages, which is GCA.

I wish you good luck, and good health. Christine Northrup in the midwest, U.S.A., writes well on how to handle adrenal low function, or distress. very good information and she also, talks of the tlc that Celtic does.

wish you good health, all my best, Whittlesey, NYC U.S.

[averis in reply to Whittlesey]

THANKS VERY MUCH GOOD HEALTH TO YOU TOO ALL THE VERY BEST

[Whittlesey in reply to averis]

You're welcome, wishing you good health, also. best, Whittlesey

[theresa49]

Hello Averis,

I too was diagnosed with GCA in July last year & put on 40mg of steroids along with associated drugs for my bones & stomach. I experienced extreme fatigue & confusion (couldn't walk in a straight line). My big mistake was reducing the dose too quickly & experienced a major flare in September, so since then despite the awful side effects, I have been reducing very very slowly & taking advice from the wonderful people on this forum. I am now down to 18.5mg & YES it does get better. I take notice of what my body tells me & have a lie down in the afternoon even for half an hour it does help. All my best wishes to you.

[averis in reply to theresa49]

THANK YOU VERY MUCH FOR REPLYING I WISH YOU ALL THE VERY BEST

[PMRpro Ambassador]

Yes - it will improve as you get better and the dose reduces.

You also have to bear in mind that the illness itself causes fatigue - all autoimmune disorders do - and part of it is your body telling you to rest to give it a chance to heal.

This isn't being alarmist - but GCA isn't a common cold, it is a real illness, not something you can ignore and it will go away. Lots of people say they felt really ill to start with and we know that some of them found they started to improve when they started to rest rather than forcing themselves to get up and go to work or do the cleaning. Sleep is a wonderful natural healer - and high dose pred doesn't help you sleep. So try to rest all you can.

[averis in reply to PMRpro]

THANK YOU FOR REPLYING I WILL SLEEP WHEN IT COMES ON AND SEE HOW IT GOES NO JOY GETTING OLD THANKS ALL THE BEST TO YOU

[Narducci]

Hi, I was diagnosed with GCA two years ago and immediately put on 40mg of prednisolone. I actually felt more energetic than I had for a long time - the steroids do give you a boost. As per other reply, do not be in a hurry to reduce the dosage. It has taken this long for me to get down to 8mg. It has to be done in slow stages and monitored very closely, but things do get better!

Just be glad, as I am, that you have been correctly diagnosed - there are a lot of people out there who have not been, whose sight is at risk and who potentially

could suffer serious consequences to their general health.

I wish you all the best - hang in there!

Best wishes

[averis]

thanks to all for advice I wish you all the best with good health too Joan