Hi Krysa,
It’s lovely to hear from a fellow Aussie! I’m under the care of a haematologist and neurologist in Melbourne. They both acknowledge that there is not a lot of experience in this country with Anti-MAG PN and I’ve found medical journal articles online that they hadn’t ever seen! So I feel as if we’re all trying to find a way forward together.

Initially, my haematologist wanted me to have a cocktail of Cyclophosphamide, Rituximab and Dexamethasone. At the last minute my neurologist changed it to Rituximab only as there usually worse side effects with the cytotoxic drug. However I still reacted to Rituximab, with several days of fevers and chills and then fatigue for two weeks. I only had one week out of three when I felt I had any energy.

At that stage I needed a stick to leave the house and couldn’t walk easily in the dark. Eighteen months ago I also had a sural nerve biopsy during the diagnostic stage. That has added to the numbness in my left foot and still causes constant pain.

In terms of management, I’m thankful that I have an extremely helpful husband and who drives me wherever I need to go. It has been very hard to have to give up driving, as is required legally for people diagnosed with PN. Before COVID-19 I was about to apply to be medically tested to regain my licence. I applied for a government health care plan, but didn’t get to start with a nutritionist or exercise therapist before COVID restrictions started. I support my legs and arms with extra pillows and sometimes a bed cradle at night to help with the pain. I tried Pregabalin (Lyrica) for a while, but it didn’t help and I try to limit my use of medications anyway.

The other significant help in facing my health problems has been my Christian faith and the support of friends across the world who pray for me.

What helps you??