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!
Hi CarerHusband and very warm welcome to this corner of the Macmillan Community although I am sorry that you had to find us and especially sorry to hear about your family member and the challenges you are dealing with.
I am Mike and I help out around our Lymphoma groups.
For context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well……. I was also diagnosed with Asbestosis in 2012, A-Fib in 2015 resulting in a heart attack back in April 2022 and Prostate Cancer this April past.
I was on a significant amount of Prednisolone over my main treatment years between Oct 2013 to Oct 2015 and I had a long taper period….. so yes to brain fog, memory loss, cognitive impairment…… my fatigue lasted for about 18 months following my last treatment (A second Allograft (donor) Stem Cell Transplant)…… steroids are evil and are just as bad during coming off them as you have to deal with cliff edge experiences.
As of today I am exactly 11 years since I had my Stem Cell Infusion…… and over these years I have lived with regular times of low BP….. and a heart rate between 60bpm to 200bpm in the space of a few minutes with my blood results being regularly at the lower end of the acceptable ranges.
Over these post 11 years au have been 7 times back in hospital (40 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2, passing out….. not including the heart attack…… we tried immunoglobulin treatments but it turned out I was very allergic to them!!!!!
So I can’t answer your question clearly as each situation is different……. But based on my…. and my wife’s experience we learned to deal with the quicks of the post treatment world and continue to navigate life.
I turn 71 in Nov and apart from the ongoing challenges especially the Prostate Cancer I am living as good a life as any fit and healthy 70 year old can be living.
