I’m looking after my elderly uncle. His wife passed on and shortly after that event he was diagnosed with PMR. He’s had it 3 & half years now. He’s struggling and no other family to help as all live in Canada.
so. Should he see a specialist and if so what sort of specialist should he see?
He’s been managing his own steroids (I can’t remember the full name) but they give him preg head?? So he gets very confused- hence me trying to help. What is preg head and what can he do to make the symptoms better?
i am in my 30’s with 2 toddlers so finding it really difficult to do what I can - where can I get more help for him. His doctor surgery isn’t very helpful and won’t speak to me because of confidentiality.
sorry for the ramble . Thank you in advance.
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Daisypeta1
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Sounds like a very difficult situation but he sounds like a vulnerable adult and you may need to make a case to make someone listen. His confusion may be due to dementia which needs to be assessed. Is his next of kin aware and are they in the same country? Does he live with you?
What dose of Prednisolone is he on? This is quite important. Pred head is often a term for the muddled head one can get on steroids. However, this is usually on higher doses and if he has had PMR for 3.5 years, he probably ought not to be on a high dose now.
For PMR your uncle would have been started on 15mg or thereabouts- maybe 20mg… and after 3 and half years should be below 7mg perhaps even 5mg. The dose should be written on the prescription label on box/bottle of Pred….
Your uncle will be on Prednisolone [steroids], and the so called ‘Pred head’’is quite common - it can be due to the steroids but can also be part of the chronic autoimmune illness of PMR.
If you want to speak to the GP surgery on his behalf, all he needs to do is to tell them he is happy for you to do that… perhaps if you went to appointment with him [assuming you can get a face to face one] it could be arranged then.
In most cases a GP is quite capable of treating PMR, and he only needs to see a specialist [a rheumatologist] if his PMR is more complex, or he has other health issues which make it so.
You might like to have a read through this to give you more information, so you feel better equipped to help - and well done you, I’m sure it’s difficult for you with little ones of your own -
I am so sorry to hear that. It is actually ‘pred head’ as the pills he will be taking are steroids called prednisolone. They have all sorts of side effects, one being brain fog or pred head! If he has had PMR for three and a half years his GP should refer him to a rheumatologist. The only trouble is the waiting list is rather long. Has your uncle issued a Power of Attorney? I don’t know how he would feel about you being his Power of Attorney for health??
thank you for all getting back. He has a daughter (my cousin) in Canada but she can’t get over here very often. I’ll ask him to make an appointment and I’ll go with him and see what the doctor can do.
My uncle lives in his own and copes well. He cooks, cleans and can look after himself that way but he’s struggling with organising things and remembering things.
At some stage he’s hoping to go back to Canada but with Covid and one thing and another he’s not sorted anything. I think he’s worried about the upheaval at his age. He has his church and church friends so has company but not much on hands help.
That would be good if you can as two heads are better than one, especially if one is having trouble with memory. I had the same situation with my father-in-law who was becoming muddled at times and going with him was essential. Is he aware himself that he is having memory difficulties? It would be good if he can tell the GP because the cause can be a number of things.
The GP really needs to get a handle on his steroid dose and PMR management. Is he having problems with stiffness or pain or is he ok? Do have a read of DL’s link because knowledge really will help you navigate this. The objective of steroid management is to make sure someone isn’t on higher than they need long term and certainly not lower by reducing the dose really slowly over a few years.
Just to add - when you do go to the GP with your Uncle, get them to make a note on his records that they can speak to you in the future (with your uncle’s agreement of course).
If his confusion is very noticeable it may be that it is cognitive decline or the onset of dementia. It's important he gets this checked out if you can go with him to the GP. Is he capable of sorting doses and tapering for himself? I looked after my aunt who had both pmr and vascular dementia, and her GP surgery organised her medication boxes in daily doses. I loved my aunt dearly, but it's a lot of work and anxiety,, especially for you with children too. This forum is a fount of wisdom and friendly support for PMR. I found AGE UK, a national charity, very helpful with my aunt too. Do you have anything similar where you are?
Ask the GP if he would benefit from being referred to a rheumatologist. I felt my GP was not really managing my PMR too well ( very busy and other priorities ). I got referred and the rheumatologist has been really helpful. Also it may be advisable to take out a power of attorney for your uncle if he is amenable to that in case his confusion increases, it would mean you would face less obstacles in helping him navigate through things.
They should have a more in-depth understanding of PMR - but just beware it’s not always easy to get an appointment- and they sometimes are in more of a rush to get the patient off Pred, by adding in other drugs…
Personally, I found that the rheumatologist I was referred to had more time for me than the GPs I saw. He explained all about the risks and benefits of prednisolone and adjusted my dosage ( upwards ). The GPs were well meaning but either had little time or not really much detailed knowledge of PMR and were very much against long term usage of Prednisolone whereas the rheumatologist said there is very little harm when on 5mg or less.
To his G P on his behalf with his signature explains he is happy for you to speak to then and disclose his medical treatment this should solve the problem
It would be better to formalise this with a Lasting Power of Attorney for Health & Welfare if your uncle is willing. A solicitor or GP would need to assess his capacity to sign the document That is, to ensure that he understands what he is signing. As you are his closest relative living in UK it should not be a problem. Why not discuss it with your cousin?
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