My 96 year old mum has been on Prednisolone since 2014 for GCA after a lengthy stay in hospital she was discharged on just 1mg having been on 6mg on admission, she was discharged to a nursing home after being in a care home for 8 years meaning new GP and staff looking after her. Mum is very frail and we’re not getting much communication from her, I have queried the low dose as I was always under the impression that the steroids maintain the limited sight she has, the GP has agreed to do a blood test to check her ESR level but has implied her sight is unlikely to deteriorate unless she has a flare up but due to her present mental state it is doubtful we would know. My question is am I right if the steroid dose is too low will it affect her vision and if so will it recover with a higher dose? After 8 years I have learnt that GP’s have very little knowledge of this condition but mum is too frail to take her to rheumatology or to get her eyes checked hopefully the blood test will show if she is too low but I’d like to know for any future problems.
Thanks
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4sibbs
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Goodness! Presumably her eyesight is only at risk if her GCA is still active. On what basis was she kept at 6mg? However, what I would also worry about is that by being dropped from 6mg to 1mg in one go she may be suffering from adrenal insufficiency. I am surprised that the GP isn’t thinking about that too. Have a look at adrenal function in the FAQ’s if you are not up to speed on that.
Thanks Mum did have regular blood tests with her previous GP to check the dose, she was in hospital for 2 months with an unrelated condition and we weren’t allowed to visit due to COVID so not able to keep track of her meds as getting through to the ward was difficult and they only gave us the minimum information it was only when she was discharged we found out it had dropped so low we can only hope during that time it was monitored and reduced accordingly. She has previously had a suspected adrenaline crisis when a hospital consultant stopped the steroids saying they hinder healing, we only knew that time after she was discharged hence this is something I am concerned about too but it is interesting what you say about her eyesight only being affected if GCA is still active as the GP said a similar thing I presume her ESR level will show the level of inflammation so it was worth me mentioning it to the nursing home. Thank you
A doctor to stop steroids suddenly is appalling. It’s basic stuff and it’s rule number 1. It’s not an adrenaline crisis but adrenal crisis when the adrenal glands don’t produce enough cortisol that is vital for the body to survive constant challenges to it. When the steroid dose has been above a certain level, they don’t bother working because there’s ample coming from a pill, and if you keep that up, they can go a bit dormant. When steroid is withdrawn suddenly, even slowly, not everybody’s adrenal glands can switch on accordingly. If one’s cortisol is too low, it affects every part of you including mental state. Some docs think that under 10mg you can whip it away with no problems but talk to any Endocrinologist and that isn’t the case. Testing for adrenal function is not a simple case of just testing some routine blood because it depends on dose, how long for, when the blood is taken etc. if her cortisol level was checked at 6mg, it wouldn’t have been very good in all probability. If she’s on 1mg then an early morning cortisol before her morning dose might be useful and worth asking for. The eyesight is at risk when there is uncontrolled inflammation from autoimmune activity and as the condition burns itself out, the risk reduces down. The steroid is there to counter that inflammation, nothing else. If there is none there is no need for the steroid. The guesswork is whether any autoimmune activity is still there and perhaps they were hedging their bets by keeping her on 6mg instead of going down to zero. For some, ESR level is a good indicator but It isn’t foolproof because sometimes it shows later than symptoms and also, it isn’t specific to GCA. A bit of a urine infection or a cold can send it up and all you have is an increased number but no idea of cause. However, if she is not able to communicate the finer details of symptoms, ESR is probably the best option.
Snazzy has already said exactly what I was going to say!
Over what period of time was the pred dose reduced from 6 to 1mg? Is she less communicative than previously - though of course the hospitalisation could have done that.
Did they bother to ask you why she was on pred? Or even TELL you they were stopping it?
At the age of 96 I really can't see any benefit on her being OFF pred and with the best will in the world, after so long and at that age I seriously doubt her adrenal function will have returned adequately. What were they thinking about?
Thank you for replying, mum does not have a dementia diagnosis and is therefore deemed to have capacity which often means the medical profession can use this as a reason to not include family about her care, so no we were not consulted during her stay in hospital I always send notes with her which includes why she is on steroids and that they shouldn’t be stopped. Our local hospital closed for visiting from Dec to March which covered most of her inpatient stay, having been told she had deteriorated I wrote to the chief executive to ask for special permission to see her which was granted but with limitations. It was an incredibly difficult and worrying time and after 8 years in residential care it was decided she now needs nursing care and moving to unfamiliar surroundings and different staff has greatly impacted on her mental health ( she is also very deaf) so it is difficult to know if her demeanour is due to the reduced dose or anxiety, the steroids have not been stopped this time but reduced to 1mg but how or when they were reduced we don’t know, I may need to consider applying for power of attorney if only for her health and welfare going forward. Thank you again for replying
1mg is useless as a replacement for adrenal function - 5mg would be normal but even then, it isn't ideal. Hydrocortisone is usually preferred but it means 2x daily dosing and that will complicate matters on the ward or in a nursing home and pred is adequate in most cases. I think POA is probably a very good idea.
Whilst my sister and I were waiting for power of attorney to come through we asked Mum's GP surgery what we needed to do to speak to them on her behalf in the meantime. It transpires many surgeries have a form to complete, including the patient's signature which enables all that. Of course some of the medics still ring Mum direct which is pointless as there is no way she will remember they rang, never mind what was said, but it was a start. Mum still does not have dementia diagnosis either. I do wonder if at the age of 97, the medics think it is not worth their time....
Does she have a POA in place? Start early; it’s all still very delayed due to Covid. We are waiting to register an already existing old style Enduring POA and instead of 3 months it’s now 6 months plus.
If you're going for POA, be quick while your mum is still deemed to be able to manage her own affairs. Once that is past, you can no longer get POA and have to apply to be a Deputy instead, which is much more complicated and costs £371 per POA instead of £82.gov.uk/become-deputy
I have just helped my parents too make POAs. If you don't want to make the POA yourself, the best service you can get is probably for AgeUK, who also charge a lot less than solicitors.
Can I really endorse this. It is best to get any Power of Attorney registered when it is set up to prevent the nightmare of trying to deal with registration once it is requires. It costs but well worth it not to add to an already stressful situation.
Husband & I signed forms at our doctors surgery& now have access to each others doctors notes, records etc. I’d still go ahead and get POA quickly & now (we did for my dad & it was a necessity soon after it was signed), but the forms from the doctor took 2 minutes, & access was much faster.
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