Hello everyone,
I am a full-time carer posting for advice and shared experiences from fellow carers or patients.
My loved one has a complex medical picture:
Oncology/Immunology History: Remission from Non-Hodgkin Lymphoma (NHL); receiving regular Subcutaneous Immunoglobulin (SCIG) treatment.
Recent Diagnosis: Diagnosed with Giant Cell Arteritis (GCA) 5 months ago.
Complications & Co-morbidities: Secondary heart failure, high blood pressure, and borderline blood glucose levels.
Steroid Tapering Plan: Currently tapering Prednisolone (now at 10mg, reducing by 1mg per month down to May), overseen by immunology/rheumatology.
Our main concern:
We notice fluctuating episodes of acute confusion/delirium and cognitive dips during the day. A brain CT scan returned completely clear. These episodes seem strongly tied to medication timing, blood pressure dips, blood sugar shifts after meals, and overall physical fatigue.
Has anyone here experienced similar transient delirium or "brain fog" during steroid tapering alongside cardiovascular or immunoglobulin treatments? How did you manage daytime cognitive fluctuations as the steroid dose decreased?
Any insights, reassurance, or practical tips from other carers would be deeply appreciated. Thank you!
Hello CarerHusband
My name is Steph and I’m part of the team who look after the Online Community here at Macmillan.
I am so sorry to hear that your loved one has a complex medical background following treatment for NHL. It’s positive that you’ve found us here as we regularly see the benefit of members being able to talk to others in similar circumstances.
To help you find more members who might have relevant experience to share, I have joined you to the NHL forum and posted your message there. I hope that you’ll receive some supportive responses soon.
Have you already discussed your concerns with the healthcare team in charge of your loved one’s care? Please do let us know how you get on with managing the delirium and cognitive fluctuations.
If you’d like to talk anything through with a nurse at Macmillan, I’d encourage you to contact the Support Line. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
Please do let us know if you have any questions, if you’d like some help using the Community or further support with anything else.
