I have GCA/PMR for 2 years now .started on 40mgs of pred and now on 23mgs.l can't seem to get much lower than that. I am constantly very tired and fatigued all the time. I find it hard to do anything. I would like to know if it is the pred or PMR/GCA doing this to me. Also how long does this go on for? I spend my time trying to get out of this fog l am in. Does anyone else feel the same?l am so fed up l feel l will never be the same again.Help.
When you say you can’t get lower than 23mg, do you mean a flare of GCA symptoms or the tiredness? I didn’t really start to feel human until about 10mg to be honest. 23mg is still a fair whack of Pred and I found the ‘preddiness’ seemed to accumulate. I don’t think one is prepared for how long this process takes and for those starting on high doses it feels like forever. Do you take vitamin D?
I was just diagnosed by my rheumy with prednisone induced myopathy. Too much prednisone over time leading to incredible fatigue and weakness. I was diagnosed October 2018. Had a flare July 2020 Lost part of the sight in my right eye. Now on Actemra weekly and a taper. At 12 today. Headed for 8 in 14 weeks. The myopathy started mid November 2020. My rheumy assured me I will feel better. Fingers crossed.
Hi there. Well, I've been on pred almost 2years. I'd tapered down to 2.5mg by last sept, then had a flare and currently reducing down from 11mg to 10mg now, having had to increase back up to 15mg. I too have experienced that same fatigue and weakness at above 10mg and it has gradually returned again a second time. As Snazzy suggested, it seems to have an accumulative effect,.....so second time around it feels even more apparent. However, I know that as I taper to lower doses the fatigue will diminish again, but because some of it will almost certainly be caused by the PMR itself, my strength and stamina is still going to be reduced to some degree.
At lower doses you should start to feel a bit better in yourself though.
Make sure you're eating a healthy diet, drinking lots of water, preferably no smoking and try and do some gentle exercise each day within your own capabilities......even if it's only a 5min walk around the garden! Rest when you need to, and most importantly.....have realistic expectations. It can all feel quite overwhelming at times but if you can accept the 'restrictions' prednisolone brings with it then that definitely makes life easier...... and for the most part these side effects are only temporary and will disappear as you reduce down lower.
You're still on quite a high dose so I'd expect you to definitely be experiencing the fatigue you describe. Please try not to despair though......take things slow and steady and you'll get there. Patience is the key.
Who is managing your GCA/PMR - are you seeing a Rheumatologist? 23mg is high after 2 years.I started at 60mg & I agree with Snazzy it wasn’t until I got to 10mg that side effects of pred subsided but still fatigued.
It could be either or both - some people don't get the pred boost most doctors think we do and most autoimmune illness has fatigue as a major component and it lasts as long as the underlying disorder is active. Pred cures nothing, it manages the inflammation to allow a better quality of life until the a/i bit burns out and goes into remission - which it does eventually for the vast majority of patients, especially the GCA. PMR can be rather more recalcitrant,
This link might help you understand a bit better:
healthunlocked.com/pmrgcauk......
- above all the different SORTS of fatigue that come with a/i disorders because they are all the same,
But I do agree with others - that is a high dose to be at after 2 years. Are you setting your expectations of what you can do too high? Pacing and management by you yourself is crucial for a better QOL.
What is it which prevents you being able to taper below 23 mg? Is it flare up of symptoms, or the fatigue, or what? How do you try to taper? Are you using a slow taper method developed by patients, or trying to taper in bigger and/or more frequent chunks? You'd likely feel less foggy if you could get that pred dose lower. Fatigue can be caused by a number of things and your doctor should check everything which might be contributing to it. When my doctor did she checked a bunch of stuff, can't rememebr what, but only low iron level showed up as a possible cause, but I was at a much lower dose than you at the time (4 mg I think) and at that point adrenal function was probably playing a part. It would not at 23 mg.
Thank you Heron and everyone who has given me good advice. I have been tapering at a l mg every 3 weeks. Then k start to get a small pain at the side of my temple and get worried because of the GCA. It is just an up and down game. My rumatologist wants me to start MX but l don't want anymore hard drugs. I will take your advice and go down to 2mgs lower. I speak to my doctor on Thursday and will go from there. Thank you all again.
You mustn't taper if you still have symptoms. I'm just pointing out that the fogginess may be from the pred. I know a lot of people have fatigue with auto immune disease. To be perfectly honest I did not experience true fatigue until I got to about 4 mg. But since then it has been a bit of a constant companion, I am definitely not the person I was prior to pred. But for a year before pred I was experiencing worsening PMR symptoms and would never want to go through that again.
I can relate to this, sometimes feel like my legs are so week I am frightened they won’t keep me upright. I am permanently exhausted and feel so useless 😥
I went through a stage where I felt like I was walking through water all the time. Around 4 mg. That sensation did go away but I get tired very easily now, which I didn't before. Was at that level mid 2016 after a year on pred, so it's been a while. I suppose as I'm older now too this is probably permanent.
YES! I too feel like I'm walking through water only with hip pain and extreme leg stiffness. Can barely lift me feet off the floor by the afternoon and really haven't done much. Mine started at about 8.5mg now on 8. I keep blaming my back but perhaps it IS the PMR?
It happened to me much lower, I am clear on the dose level, 4 mg, because it was such a striking symptom and made my daily walks so exhausting. Later I thought it must have been lagging adrenals. It did go away but I don't remember how long I felt like this. I did continue tapering DSNS, as I had no PMR pain. So I "blame" pred, not PMR directly!
Re tiredness after reducing steroids
tiredness and sweating
Tiredness 
Tiredness & Depression
Fatigue at 2mgs.
