Has anyone experienced mental health problems due to GCA and can higher doses of steroids help?
Has anyone any information about pseudo dementia ... - PMRGCAuk
Has anyone any information about pseudo dementia as a result of GCA. Could my mum’s rapid onset dementia symptoms be related to her GCA?
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Daughter-Hayley
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Oh Hayley!
So sorry that this has happened to your family. I am not aware of a direct link between the diseases. My own mum had the disease. I think it was a series of assaults to the system.
Thank you very much for your reply. I’ve just found a helpful lady in the memory clinic team who is finally listening to my concerns, but it’s early days. My mum has several new health problems which have only occurred since she started with giant cell arteritis, but nobody seems to be looking at the whole picture, only treating individual symptoms. (I’m new on this forum so please forgive me if I don’t use it correctly- I’m still learning how to navigate around it). Regards Hayley 😊
DorsetLadyPMRGCAuk volunteer
sorry to hear about your mum…there are cases, but it is rare - couple of links to look at -
academic.oup.com/ageing/art...
pubmed.ncbi.nlm.nih.gov/233...
But it’s probably something you need to discuss with her medical team…
thanks so much - I’ll check out the links 😀
For more general info on GCA might be worth looking at this from FAQs -
healthunlocked.com/pmrgcauk....
..and don’t worry about finding your way around forum, if you can’t find what you want, just ask
..maybe start with this - for your info as much as your mum-
healthunlocked.com/pmrgcauk...
many thanks again. Hayley 😀
I totally sympathize with various doctors looking at individual symptoms. In fact, the last time I went to my doctor I said I wanted him to look at the overall picture. He actually did and tested my for fibromyalgia and diagnosed me on the spot. I'll see my rheumy to confirm but it helps to state just what you said to the doctor. Good luck and I'm sorry you're dealing with this.
thank you so much for sharing your experience. It’s frustrating but I’m going to keep fighting for mum as she can’t. 🥲
Welcome to the forum , and I'm so sorry to hear about how your Mum's health is being effected.All I could say is to agree with Dorset Lady it would be possible but rare.
Rapid Onset Dementia is more common with people whom have autoimmune conditions , certain rarer types of Alzheimer's, Parkinson's and neurological disorders, after severe infections of the kidney , pancreas or liver, and in those with very low immune systems.
It can also occur at the later stages of liver failure.
The situation is complex , and you are right your Mum needs to be treated with her Medical Team looking at the whole picture not just with treatments for one thing at a time. It is likely that the doctors involved in your Mum's case are having a daily discussion about her needs if she is currently being treated in hospital , but that you would only see them come to visit her individually. You can request to speak to one of her Specialists and ask directly if all of her doctors are discussing her treatment as a whole , and if they aren't could that be possible.
You could also ask for all the details of her drugs to look up in case you need to query anything and what other care she is receiving to improve her mental state , like cognitive therapy .
Is the dementia rapid onset or pseudo ?
From what I know with experience of these issues with my Mum and Uncle , pseudo dementia and delirium can be temporary and show improvement once the underlying illness that caused it has been treated and brought under control but rapid onset dementia is chronic rather than acute if triggered by another condition.
Please post again with any other questions about GCA , your Mother's care ,,and to let us know how you are both coping. We are always hear to listen and help if we can . Take care ,,Bee
corticosteroids psychosis after high doses of prednisolone can appear as dementia but is no different in appearance to urine tract psychosis which is more common. I managed to get my wife into hospital and forced the various consultants there to deal with it as prednisolone does show it as a side effect. My wife changed from sensible to deranged in just a few days but took a month in hospital to return almost to normal again. They reduced the steroid dose to 20 and added methotrexate. That’s our experience, hope it helps
Many thanks for sharing your wife’s experience. I really have wondered myself whether the prolonged steroids were helping or causing problems. I would like to post her full story when I get chance. Many thanks again. Hayley 😀
very best luck with getting to the root of the problem ( if that’s indeed possible)… I have GCA and have been on steroids for 2 and a half years, and of course every time I forget a word, at my age (74) I think it’s the slippery slope. But your mum’s situation is serious and I hope you can get the help you need. You’ve also taught me the term “pseudo dementia “, I shall now investigate. Good luck.
Thank you so much for your reply. It’s lovely to feel everyone’s support. I will keep everyone updated. Warm regards. Hayley
PMRproAmbassador
There are various forms of dementia including vascular dementia which is maybe the closest link to GCA.
The vast number of underlying causes is clear from this article:
sciencedirect.com/topics/me...
and this is also interesting:
memory.ucsf.edu/dementia/ra...
stanfordhealthcare.org/medi...
GCA can be seen as just one very specific form of stroke though whether more pred would help in this case is hard to say - or it may even be the cause,
I'm sure they will be considering all the potential causes of rapid onset dementia - it is something of a detective mystery and it takes time to collect the evidence. Do let us know how things progress.
Hello. Thank you so much for your reply. I will definitely read the articles. I have asked the memory clinic for a second opinion as to mums diagnosis which they seem willing to do. I will post the results. I imagine it won’t be quick and I’m hoping they will consult a rheumatologist. The brain scan that was carried out did not show any evidence of either Alzheimer’s or vascular and the lady from the memory clinic said that one possible diagnosis that was proposed was that it possibly was a pseudo dementia. The final diagnosis they gave was mixed diagnosis (Alzheimer’s and vascular) based only on symptoms. My mothers symptoms are complicated and intermittent and not typical. I’m hoping that her brain scans will be looked at again. Thanks again. Hayley
You mentioned that your mother has multiple new health issues. If high cholesterol is one, be aware that statin drugs can cause dementia. The body makes cholesterol for many good functions, and it is essential for healthy brain tissue.
Hello, thanks so much for your reply. Shes not on any statins (she had briefly been on them a couple of years ago but they gave her nightmares). Regards Hayley
hi Hayley, another daughter here 😊My mum had a severe but slowly developing case of vascular dementia and I do empathise with your situation.
My mum didn’t have GCA, but her first cousin did, as do I. Any link would be interesting, but I have no evidence of it.
Like the RT18 I highly recommend Talking Point, the Alzheimer’s Disease forum (which is actually for patients and carers dealing with all types of dementia. Like this one, it’s a wonderfully supportive group.
All the best to you xx
hi Hayley, I am another daughter! My mum too has GCA and vascular dementia, but clearly different from your mum’s rapid onset. My mum was getting confused prior to GCA but it has worsened since diagnosis - but that would happen anyway I guess.
I have to remind clinicians of the whole picture very frequently.
keep fighting! It’s tough but the right th8ng to do!
For dementia advice and experiences I recommend the Alzheimer’s society Talking Point forum.
