I have GCA diagnosed 18months ago now down to 12mg from 60mg after a few blips. still get horrendous tiredness at times have to go to bed

[Vpankhurst]

Does anyone else get this exhausted feeling?

[venezia1]

Absolutely! I was diagnosed with GCA 22 months ago, RA four years before that. I was started on 80mg steroids, gradually reduced to 15mg last autumn, but am having huge difficulty getting below that. Am following PMRpro's very slow reduction plan this time, and am down to 2 x 15 and 5 x 14. Hope to make it the full 14 soon. I have the added pressure of very bad pain in my hips - I need two replacements but surgeons are not willing to operate until I get down to 10mg!

Meanwhile, to answer your question, yes, and it's got a lot worse since I started this last reduction. Have to rest a couple of hours most days, and don't usually get up till 9.30 a.m............so you're not alone!!

venezia1

[ritter]

Hi yes it dreadful but it is a debilitating disease but when you get it under control every thing will fall into place,I changed my diet slightly eating food that has a good effect on our artery,s I was diagnosed with GCA February 2012 and it has taken me till now to get on top of this illness I spent months in 24/7 pain and could not get out of bed when i did try it took me 45mins to get up and get dressed it was crazy I just wanted to die to be honest if we had euthanasia in the UK i would not be talking to you now, as steroids in large does do horrendous things to our body,s and minds, been lethargic on a permanent basis is normal for this disease, cramps in legs.. not sleeping .total dizziness .enlarges all you organs

fills you up with water and lumps all over you body but mainly round you mid-rift in fact you look like you have been blown up with a bicycle pump and of course that alone courses pain.

But on the upside when you start to reduce the preds you will feel a great deal better,and the but you must reduce very very slowly so you body adjusts with very little effect,

good luck and if in doubt consult this forum first and doc second, Anne.

[Jane1175]

Hi Ritter, I have pmr and gca and I have been on high dose of pred since October,Reading what you wrote was just like reading as if I wrote it as that is how I feel feel . In answer to vpankhurst question, yes if get very tired,quite the opposite to before when I was on high dose and getting up early now I have to drag myself out of bed and I go so tired in the afternoon and evening. I wish everyone all the best and hope we are all well very soon.

[jinasc]

Chronic Fatigue seems to go hand in hand with GCA. I found that it was easier to 'go with the flow' and listen to your body. If I was peeling potatoes and felt dreadful, I flopped onto the settee and slept, maybe for half an hour and then found I could go back and finish peeling the potatoes. If I tried to battle through it, it became worse. I then learned to become selfish, me 1st, 2nd and if anything left over me again. I got through it all.

I then was advised to read 'The Spoon Theory'

butyoudontlooksick.com/wpre...

bbc.co.uk/news/blogs-ouch-2... this from BBC News.

[Vpankhurst]

thank you all for your replies it makes it feel better knowing I am not the only one feeling like this as it is quite a lonely disease you look ok but you feel drained. so onwards and upwards

[mickt]

Hi vpankhurst ive Gca pmr since last june eyesight was save with pred on 15mg a day and 20mg methotrexate weekly.Was on 80mg at one stage reduced then had bad double vision,so back up again .Hope fully get down without eye probs.I too suffer fatigue badly I walk daily 30 min and have taken up swimming again,not breaking any records mind.Its part and parcel of vasculitis and its meds that makes us tired .Ive had to be pensioned off on ill health from work I did a manual job couldn't do it.I realise im lucky got good scheme im 51 married my wife works thank god.It has changed our lives this illness.It is good to know your not alone and some great folk on this site.All the best to you.