MS-Selfie

1 week ago | gavingiovannoni.substack.com | Gavin Giovannoni

I always stress the importance of derisking disease-modifying therapies as best you can before starting treatment. For example, we try to insist that patients have an up-to-date cervical smear or vaginal human papillomavirus (HPV) PCR to exclude active HPV infection before starting alemtuzumab. In reality, we should be doing this with all chronic immunosuppressive therapies, particularly the S1P modulators (fingolimod, siponimod, ozanimod, ponesimod).

1 week ago | gavingiovannoni.substack.com | Gavin Giovannoni

I am 42 years of age and have been on ofatumumab for 14 months. Before this, I had been treated with ocrelizumab (Ocrevus) and before this, dimethyl fumarate (Tecfidera). I was switched from ocrelizumab to ofatumumab because of mild persistent lymphopaenia. My lymphocyte counts were around 0.7 to 0.9. My counts have recovered on ofatumumab and now run at 1.1 to 1.2. However, over the last 12 months, my MS fatigue has gotten a lot worse.

2 weeks ago | gavingiovannoni.substack.com | Gavin Giovannoni

I am 35 years old and have relapsing MS. I have been stable on ocrelizumab for the last three and a half years. I have just developed shingles, which is a very unpleasant rash across the left side of my chest onto my breast. I have an intense burning and prickling sensation where the rash is. Is shingles a common complication of ocrelizumab treatment? My pharmacist has given me acyclovir. Is this appropriate? Why wasn’t I offered the Shingrix vaccine before I started ocrelizumab?

2 weeks ago | gavingiovannoni.substack.com | Gavin Giovannoni

I suffered what I now know was optic neuritis in my left eye in 2010. I buried my head in the sand somewhat as I feared I had MS (my mum was diagnosed with SPMS when I was 8 years old), and I chose not to see a neurologist – I suppose I did not want to face reality at that time. I recovered from the optic neuritis after about 3 weeks and had no further relapses, but suffered a lot from invisible sensory symptoms (mainly tingling in both legs) over the years.

2 weeks ago | gavingiovannoni.substack.com | Gavin Giovannoni

You may already know Dominic Shadbolt. Dominic started and runs the YouTube channel The MSGuide for people with MS. Dominic is a big proponent of lifestyle optimisation to manage MS. Last year, we came up with the crazy idea of him raising money for MS Brain Health initiatives by riding across Canada. He has set himself the ambitious challenge of raising $1 million to support global MS Brain Health initiatives. Despite my trying to talk him down, he seems determined to ride across Canada.