I am scheduled for my first dose of Ocrelizumab this Friday. It has been a long campaign to get this. Am happy to share in DM’s but don’t want to subject y’all to an unsolicited shaggy-dog story about it. As with most things MS related, it is relevant to me but there are few details that can be taken and applied to any other situation, as it is rarely that simple or that similar.
What drove me to petition for it is the idea – as espoused by Prof Gavin Giovanni, and other leaders in the field – that treating MS ought to involve ‘Inverting the pyramid’ and getting in as soon as possible with the most efficacious drugs as possible. This is in contrast to the established approach of intervening lightly and working up to the most efficacious meds. I have had a long think about HSCT and been dissuaded by the team at the research hospital I go to- notwithstanding the fact that I don’t have a spare £50k tucked down the back of the sofa for private treatment in the UK – to hold off on that for now.
I am 49 (just) and have had RRMS for 25y. Statistically I am v v likely to relapse into SPMS soon. I have had steroids (oral Prednisilone), a long break then Beta-Intertferon (Rebif) until it was deemed that the neutralising antibodies are likely to have negated the efficacy of the drug, to Glatiramer Acetate (Copaxone) which I didn’t tolerate v well regarding injection site reactions that wouldn’t go, leaving me looking like I had been savaged by bees, to the CONFIRM trial for Dimethyl Fumurate (Tedcfidera) until it ended and Biogen agreed to fund participants for a 5y extension with certain active ingredient. Biogen then unilaterally pulled the plug on that and rather forced everyone’s hand.
On top of that I have gradually added to the pile of drugs as I take a 30mg Duloxetine once a day to keep neuropathic pain at bay (it doubles as an anti-depressant, though my wife thinks I am just as chipper and annoying now as I was before) as well as Modafinil 200mg (prescribed by an MS specialist in London for fatigue) and a high dose Cholocalciferol (Vit-D) of 10000iu every other day to keep a level of 5000iu in me.
I am looking forward to losing at least 4 of my daily pills, and possibly another 2. As well as that I will welcome the absence of the flushing that I get and the tummy upset.
The hospital that I am seen at has developed their own administration protocol that builds on the established one. I think they may be being overly cautious. However, better that than a cavalier disregard for safety!
To date I have had to give 13 vials of blood for testing, have an ECG two days ago, a chest x-ray, two supplementary vaccinations for HiB (only way to get it was in a combo jab for meningococcal – used for babies) and a pneumoccocal vaccine. If you are in the UK and they request you get Pneumovax 2 from the GP then be aware that the manufacturer – Merck Sharpe & Dohme – MSD) has terrible suply problems and it may be out of stock. Don’t let that stiop you as I pointed out that a protocol with an unobtainable product looked like an attempt to restrict use of Ocrevus! I offered to write to the head of the Trust asking why this was and suddenly they swore that wasn’t the reason and allowed me to get a similar jab made by Evans called Pneumovax.
So, unless I have contracted a lurgy in the meantime I ought to be good to go on Friday.
I was told to expect to take almost a full day the first time as they will give me IV steroids, a break, IV anti-histamine and a break and then the 300mg IV Ocrelizumab.
Assuming it all goes well then,
Will keep y’all updated.
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