Paul

[pam555]

Hi I am new to this forum and this my 1st post, I am a carer for my father who has GCA & PMR Dia last July, he was prescribed a high dose of Prednisolone (12x5mg a day) to start with but has slowly reduce, he should be on 2mg now but he as he has had constant water infection (because of the Steroids) he is on 5 x 5mg a day at present and because he had a water infection he was persc 3 x 500mg amoxicillin per day for 2 weeks and he is now on 1 x 250mg per day long term to keep any infections at bay ,I will not bore you with the nightmare that I have had with the Gp and consultant in regards to my worry of his failing health ie really bad confusion and I have come across this forum and wondered if anyone has noticed a quick deterioration of health with themselves or someone they know. My father is 76 and never been unwell but since being dia with the condition of GCA and been persc the steroid he is a changed man, I know that water infections can make you very confused but as he no longer has a infection he still remains and has become more and more confused as says really strange things, I am glad to say he does know who I am but he can no longer understand the workings of his telephone or his tv control, he tries to turn the tv over by pointing his finger at the tv, he puts his teeth in backwards, I dress him for the day and he thinks its night time etc etc, things are really bad and very sad to witness sometimes, I know that he gets cross and short tempered because this is one of the side affects, I have voiced all this to the Consul and Gp and they say that the steroid causes confusion, if honest they have shown no concern at all, this is why I have posted this message, be most grateful for any advise, prob will not be able to respond straight away as caring for him, Paul

[DorsetLady PMRGCAuk volunteer]

Hi there,

Very sorry to hear the problems your father has been suffering, Mood swings and confusion can be caused by Pred, but the symptoms you are describing certainly seem to be very extreme. I can't recall anybody else on this forum suffering to the same extent.

From what you describe I would suggest perhaps he has the onset of dementia, has that possibility been addressed by anyone medical. If not, then perhaps you should ask for an assessment. That's probably not what you want to hear, but I doubt the Pred is entirely responsible for his current condition.

Even though they have not been very helpful in the past, I think you need to go back to the GP at least and ask for help.

Please let us know how you get on, my thoughts are with you.

[AMG38 in reply to DorsetLady]

I agree with Dorset lady and think you should ask for dementia assessment. My husband was on steroids for two years win Gca and although had short term memory problems ( slight) before he developed severe dementia two years in. Please ask for assessment asp. You need all the help you can get. I wish you well. Anne

[pam555 in reply to DorsetLady]

Hi thank you for your reply, I had thought that it could be early stages of dementia, but when discussed with the Gp and consul they seem reluctant to do anything such as having an assessment until he`s meds have been reduced, and that makes me rather frustrated, again this was one of the reasons of joining this forum, many thanks for your kind words

[PMRpro Ambassador in reply to pam555]

For goodness sake - it doesn't matter WHY, what matters is managing the situation. Pred can cause diabetes - but you don't ignore it and hope it goes away when the dose is reduced, you manage it. Or rather, you SHOULD manage it - but I have met doctors who blithely ignore such a reality. Which really isn't good enough.

[PMRpro Ambassador]

I'm so sorry to hear your father's problems - and I can only say I can't even begin to imagine the distress this is causing you.

I think you need to discuss with your father's consultant the possibility that he has some form of cerebral vasculitis - because that would also account for the scenario. GCA does affect the arteries in the head and that can give rise to this sort of status. GCA is also associated with an increased risk of stroke in the first year - and that is also a possibility. Stroke can be mental effects, not just physical ones, depending on what part of the brain is affected. Pred can and does lead to confusion and so do urinary tract infections - they are the most common reason for confusion in the elderly - and it is quite possible that is what is doing it but you cannot continue like this without help. You need him to be referred to a specialist geriatrician and something sensible to be put in place for his care. Not that I'd hold my breath in the UK but there we are.

As DL says, it may be coincidence, pred does accelerate the ageing process and it may have all tipped him over into this state sooner than it would have happened anyway. Does he have visits from the district nurse (or whatever they call them these days)? In my experience with similar situations the nurses have far more idea than the average GP - and will fight your corner with you.

I do hope you can find some answers very soon and do please tell us what happens.

[pam555 in reply to PMRpro]

Hi so please that I posted my worries on this forum, what a great response with great empathy from all,thank you, It is causing me great concern, I was my Mothers end of life carer she had breast cancer that went to the lung but she could converse right to the end and but my father is harder to care for in diff ways, I will make some calls next week and see if my voice will be heard as this weekend so far has been worse for my dad and I, I hope I get some response, probably become a bit of a nuisance but so be it

[PMRpro Ambassador in reply to pam555]

I only wish I knew more about the system in the UK - I'm assuming that is where you are? As I say though - I'd start with a conversation with a practice nurse if your doctors remain unhelpful. Then perhaps CAB? They should be able to provide some pointers for you.

[pam555]

Yes I am in the UK and my fathers has worked since he left school at 15, and as I said in my 1st post he has been gifted with good health thus never having to trouble the NHS he has paid into all his life, I will try the Gp & Consu and then if no joy I will get the nurse to come visit thanks for the advice

[Rose54 in reply to pam555]

Hi

Sorry you are having to go through this with your father ,I can not imagine how hard this is.

You say you are his career if you are not getting anywhere with GP contact Adult Social Services they may refer you to specialist services who will be able to do assessment .

Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

It may help just to have a chat with them .

best wishes Rose

[pam555 in reply to Rose54]

Thank you Rose for your advice and the help line number, I will call the Gp Mon morning to discus my concerns and and if no help I will certainly give the help line a call for there advice.

[olive2709]

Look for a poster on wall of surgery should say something like carers help line or local group. Kick scream be a pest , and above all get some one for you when you are a carer you need care As well

[pam555]

Hi Elizcarrol, I know that if my father had not been prescribed the steroid I think there would have been a price to pay with his eye sight so lucky that is was diag when it was, I was sorry to read that you had a bad episode hope your eye sight has improved, My father does forget so I know it has effected his memory, I was more concerned of the strange antics he is doing, really bizzare and lately he just wants to go to bed, I will get him washed and dressed and about 30min later he wants to go back to bed. Hope the new week and I can get some answers

[greenheath]

Hello Paul; I've read all your replies and can only add my best wishes to you at this very difficult time. Yes Prednisolone does weird things to you and your GP and/or consultant will seldom, if ever, tell you about all these side effects. When you read this forum, you'll recognise that a large number of PMR sufferers get a fairly negative reaction from their doctors. Sad but true. I always congratulated myself on my excellent memory but there's no doubt that, after 3.5 years of PMR and reducing Pred, my memory isn't what it was.

See if you can join your local PMR group - you'll be able to get details via this forum - and exchange information with people in your area. Is your father taking Alendronic Acid as well? It's a guard against osteoporosis (which can be caused by taking Prednisolone) - but it also has weird side effects. Make a list of questions and quiz your consultant and GP. They probably won't like it, but who cares? Your father is their patient and he (and you) need help, and they should provide it.

All good wishes

Greenheath

[pam555 in reply to greenheath]

Hi Greenhealth yes he is taking Alendronic Acid and that's is something I did not know that this pill can cause some strange affects thank you for your advice I have taken yours and all on board, I will do my upmost to get answers but I have a feeling that I will be told again that until he has at least reduce to 3 to 4 5mg per day they will not asses him as it could be a miss diag while on the meds but we will see what the new week brings

[pam555]

Hi, just a quick update about what happened in regards to getting some help today, the start of a new week and it started at 8:00 am by putting in a call for a ring back from the gp obviously and in my mind sadly has to be the 1st port off call before you can get any other health care involved it seems that even getting a district nurse to attend my father it has to be by a gp`s approval well it does at my fathers practise as I found out this morning, anyway I had a call back and it turned out to be the same Dr who I took him to see last week with my concerns that I have posted on this forum, she never even spoke to my father she just spoke to me saying it is prob the meds that are causing the behaviour and as you know I have felt frustrated with the way things where going, he has had pills reduce but his actions have been getting worse and most of the reply`s from good people on this site felt it could be a start of some form of dementia. Again I voiced my concerns to the Dr and the up shot of the conversation is she will book a scan on his head and see what the results are before we can move forward, He had one in Sep so she wants to see if there have been any changes, mind you I requested this to her first before she said that she would arrange one, I suppose this is something

[HeronNS in reply to pam555]

How very frustrating. Is there anyone else you can involve who might be able to lean on your GP, or do you think that she is starting to become more responsive to your concerns? Something to be said for the squeaky wheel and all that.

[pam555 in reply to HeronNS]

Hi HeronNS, I have called the Rheumatology Hospital department nurses help lone about 5/6 tomes in regards to water infections mood swings and now his strange behaviour and then finally got another app with his consultant and they only want to address the meds, a wrote a note and popped it in a envelope the day of the app with the consultant, I gave it to the health nurse ass to hand it the consultant before we went in to see him so he could digest just the main points, He indeed read the note and when pushed on answers it was aimed back to the gp although he could see that it was a time to start to reduce the meds,, I have tried and tried as indeed I have done today, I will not let dad suffer without a dam good fight and will see it through until I get a diag for him, I suppose that is all I am after really to see what the problem is, is it because of the meds or are they a red hearing but I do not believe that as my dad was A ok in everyway until he was put on the Pred.

[HeronNS in reply to pam555]

If this were happening to me in my community I would go to the local radio station, I would call my local politician (here the provincial one as health is a provincial responsibility). If I were at the end of my rope or did not have time, I'd plead with a friend or family member or perhaps even a clergy person to get the ball rolling on exposing the poor treatment of your father, and the lack of support for you, the caregiver. If it's happening to you, you know it's happening to countless others, unfortunately. And it shouldn't. We pay taxes with the unwritten contract that for those taxes we receive services.