Mum has joined the pred club thanks to GCA

About 2 months ago my 89 yr old mother was diagnosed as having temporal arteritis and since then it’s been such a stressful time for us. Despite her age she has remarkably good health with her only main problem being age macular degeneration. 

Her initial symptoms were very mild temporal headache and lack of appetite. Her GP told her to take paracetamol initially but as the second blood test results came back he asked for her to see him that same day. This in itself was a very stressful day as in the morning I took her to a funeral of a long time family friend. Immediately after the funeral we had her doctor’s appointment where he told her that she had suspected temporal arteritis and that she would need to have a biopsy in the very near future.

I drove her home and within minutes of walking through the door the GP surgery rang to say that the GP wants me to go back and collect a prescription which she will need to start taking immediately. I’m sure many of you can relate to this but it was such a scary time.

I picked the prescription up and asked to speak to the GP for more information as we hadn’t been told anything other than she needed to start taking the tablets immediately (they hadn’t even told me over the phone what the tablets were or what they were for). Only due to my persistence did the receptionist arrange for me to speak to the GP where he then explained to me about the immediate need for my mum to start taking the steroids.

 he look on the pharmacist’s face when he realised my mum would be taking 12 (60 mg) of steroids a day stressed me out even further.

My mum’s latest ECR test showed inflammation count was down to 3 from 65.

However, she has massive daily struggles coping with the medicine.

She’s now down to 40mg a day plus two Accrete Calcium tablets plus Alendronic Acid once a week.

Her energy levels are taking a pummelling. When she first wakes she is so confused and suffers from brain fog that only starts to lift a bit once she has something to eat and starts chatting to me (I visit her every morning).

She now sleeps a LOT during the day taking long naps. The brain fog comes and goes but never seems to be as bad as it is in the morning. She’s acutely aware that her mind is foggy and this is causing her a great deal of upset and anxiety. She seems to pick up a little by the evening but I’m very concerned that her quality of life at the moment has taken a nose dive since taking the steroids.

She has frequent dizzy spells during the day where she actually feels she is going to pass out which exacerbates her anxiety. It doesn’t help that due to her age she doesn’t have many friends left around the same age as her so her days are spent alone probably stewing in her own anxiety and feeling sorry for herself.

She also has wobbly legs and jittery stomach at times.

I’ve refrained from visiting too many forums as a lot of the information is upsetting to read from people who are taking prednisolone. I have tried to rationalise this by telling myself that people are generally only motivated to search the internet, register for forums and post articles when they have a bad experience to share or seek answers to problems they are experiencing. Nevertheless, it’s hard not to get weighed down with negative thoughts when the majority of forums tell you what terrible experiences people have had on this medication.

 I read somewhere that some people split their pred dose or take it later in the day and I was wondering if this could help my mum as this might restrict the side effects to when she is asleep. It seems some GP’s are happy for this to be done but when I spoke to my mum’s GP he was quite adamant that the dose should not be split and be taken only in the morning.

I’ve also heard people being seen by a rheumatologist and wondered if this is normal procedure or would you have to pay privately for this ?

My mother hasn’t been given any bone density tests or blood sugar tests so we have no idea what the base line figures should be. She wasn’t even advised by her GP to have her eyes checked and it was only after a few weeks and having read some information on the internet that I realised the importance of my mum having her eyes tested since the diagnosis.

I basically feel that we’re left alone to handle the effects of the medicine ourselves and although my mum has always had great faith in this particular GP I am beginning to have some doubts.

Does anyone know if the brain fog and energy levels improve as the dosage tapers or are these side effects constant throughout the treatment ?

0 likes, 40 replies