IVIG infusions - Covid

[RobertCLL]

UKCLLForum - Practical guidelines for managing CLL in COVID pandemic.

The guidelines state:

Postpone IVIG infusions as risk of exposure to COVID19 may outweigh benefit of infusion during pandemic period. Consultant to assess on case by case basis. Consider stopping IVIG and give prophylactic antibiotics for 6 months instead.

For those of us on regular infusions have you been contacted by your hospital as to what they consider the best strategy is for you?

Myself, I always attend the hospital monthly on a Saturday when there are only 3 patients. Due the Covid they have cancelled Saturday appointments and want me to attend on a Monday when the unit is full (20+). I am considering the prophylactic antibiotics as a safer strategy or skipping a few infusions until the landscape is safer! I am self isolating in accordance with the guidelines for CLL patients.

[charliegirl]

Hi Robert

This is worrying for me. I have been having monthly IVIG for 6 months and it has transformed my life. I had 3 emergency admissions with viral infections / pneumonia in the months preceeding this despite prophylactic antibiotics and have been really well since starting IVIG. It has also had an amazing effect on my autoimmune haemolytic anaemia , with Hb in normal range for first time since diagnosis.

I had IVIG last week at local hospital as it was felt I needed it. Wfter much anxiety I felt pretty safe when I got there. Only 3 patients, well spaced and I didn't use toilet, touch anything etc in hospital.

In light of this advice I will contact my haematooncologist who shares care with local hospital. I fear it may be a Catch 22 though - IVIG risks exposure to COVID-19 while at hospital. No IVIG risks other infections/ pneumonia (which often precipitates an episode of haemolysis) and subsequent emergency admission along with risk of exposure to COVID...

For now I'm feeling well and enjoying the benefit of the last injection plus the sunshine

Very best

Charlie Girl

[RobertCLL in reply to charliegirl]

My mind is still not made up, but my gut is telling me to stay at home and cancel the next 2 months. By then the landscape of the virus might be more settled.

[Newdawn Administrator in reply to RobertCLL]

This interview with a CLL specialist discusses IVIG at this time (whether we are elderly or not). May help a little.

patientpower.info/chronic-l...

Newdawn

[Newdawn Administrator]

I share the concerns. I’ve been having IVIG monthly since starting my I&V trial beginning of March last year. Prior to this I’d had back to back respiratory infections and a constant cough. The IV therapy was transformative and eliminated them rapidly.

I’ve been told there’s no IVIG for 3 months and no offer of prophylactic antibiotics although I’m already on Septrin 3 times a week.

I’m just hoping this doesn’t increase my susceptibility to the virus or diminish my ability to fight it should I contract it.

However I appreciate the high risks associated with hospital visits. I just wish my unit would start sub-cutaneous at home!

Newdawn

[Wroxham in reply to Newdawn]

Me to. I miss my trip to the day centre as they've all become friends after over 2 years.

Also wish they would introduce home sub. Maybe after all this is finally settled.

I think I can cope with a break though

as long as I have the antibiotics.

Stay safe.

Sue.

[RobertCLL in reply to Newdawn]

I wish that I start sub-cutaneous years ago, it's not an option now because of the patient training and monitoring on the first few injections.

[BellaBee10]

I went for mine last Monday and will go again in 3 weeks. Unless it's cancelled. I'll let you know if I hear anything.