» Sun May 06, 2018 8:20 am
Dear Fellow OMSers
I would be interested in any more updates from Ocrelizumab (O) users.
I was diagnosed 4 years ago. My symptoms come and go, but nothing debilitating on a regular basis. My worst symptom comes if I paddle my surfski for a long time and overheat; then I can lose my core so not be able to sit up (bad news on a surfski!). It was suggested I start Tysabri 18 months ago but I held off to give OMS time to work its way through my body. In the last 5 months I've developed irregular poor vision in one eye, and I'm anxious to get that under control. My last MRI was 6 months ago and there was a new large lesion on my brain. My neuro offered to put me on an O trial and I was tempted. However they then found a melanoma which has been cut out but rendered me ineligible for the trial. Since then O has been made available on PBS and I'm off to see him in a week - I am sure he will recommend O.
Try It: It seems that O is a better alternative than most DMDs, but I am also aware that Roche/Genentech are flooding the market with positive commentary about which I must be cynical. I believe there has been one death, but that the victim had been using Tysabri for 6 or 7 years previously which may also have been responsible. Other side effect comments that I can find seem minor. It is the only treatment for PPMS (tho I don't believe I have that), and I want to prevent my eyesight from getting worse. I understand that there is little rebound risk in coming off O. Can trying O make my symptoms worse?
Not sure: I'm 56, male, late diagnosis, disease still active so at greater risk of deterioration, but also pretty OMS diligent and don't feel as though much has changed in the last 4 years and I've never had a relapse, just varying symptoms. I take LDN (3mg).
Don't try it: GJ posted a meta analysis that suggests on average none of the treatments help anybody over the age of 54, so why should I risk it? Its interesting that the age cut off for the trial I was offered was 55 - is there a connection? If I can avoid taking a pharmaceutical I should. Why should I suppress my immune system? Get some Steroids and see if that helps the eyesight issue. HSCT treatments seem to be gathering momentum, so hold out for the big fix...if I can ski and paddle a surfski what have I got to complain about anyway?
Thanks for listening. All comments welcomed