Founder's Blog #05

I am now at the end of the 6-month trial period for the drug, Ocrevus, being used for Secondary Progressive MS. It was all going “swimmingly” as they say but funnily enough, as my immune system recovered, I did feel more vulnerable and generally more unwell. My energy levels were lower and I felt as if I had flu symptoms, without the flu.

A short digression, before I continue with the serious stuff… Another Sportin MS dinner was held at Reigate Priory Hockey Club (for which I am eternally grateful for such excellent staff and cooperation). The night was a fantastic success and a truly brilliant evening. I was surrounded by wonderful people and I could not have wished for more, but more is exactly what I got! Several generous hearts donated sums of money online after the event and the figures brought tears to my eyes. So, all of you, you know who you are, thank you.

My neurologist had said to me, and I quote “a runny nose or cold can quickly turn into pneumonia, so any symptoms of a cold, check-in with us.” Well, I didn’t, and what was a slight sore throat, tiredness and a little cough, became pneumonia – lesson learnt for the next bout of drugs. Ocrevus works on the MS by suppressing the immune system and by the end of the 6-month period, the drug weakens and the immune system recovers. I am now on antibiotics for the pneumonia. My next infusion is on the 31st March and when I meet with the team, I will recommend that 6 months is too long. I definitely feel more symptoms of the MS and combined with the pneumonia, the pain and general use of my legs becoming difficult. Because the drug did not interfere with my everyday life, there are no-side effects to speak of really, I am a fan. My next infusion is different however, it is a stronger dose I believe but I will keep you in the loop.

For now, my husband and I are going to my second home, Trinidad, which will be the medicine the doctor could not order – sunshine! My parents and siblings will spoil me and I can rest.

Lots of love, Antoinette x