I’ve had (refractive: resistant) Rheumatoid Disease for more than 19 years now. It took 12 years (coming up to that anniversary too) of “step therapy” (fail first) to be able to get access to Rituximab- the first monoclonal antibody approved.

Most therapy is self administered. Be it a daily or weekly pill, or even a weekly or fortnightly injection (thank goodness for auto injectors, I mean.. with so much bone loss in my hands….) And then therapy to support that long term use.

But mAbs have to be administered by a specially trained medical team. My scripts show ~$NZ1000/w for all the biologics I’ve had access to. Which is you know, a lot. So we tend to do day stay with as many other patients as can safely be in one room. Haem ward usually.

You get a loading dose of antihistamines, paracetamol, and steroids. You get a saline flush at the end. Blood pressure tends to drop quite alarmingly, so I do what I normally never do and have tea with sugar, and/or I pack a supplementary drink.

One of the things about tricking the immune system? It can learn, and it can wind up recognising the foreign biological material for what it is. So I am on Leflunomide to slow down my immune system. Auto-immune disorders do not indicate a “weak” immune system, they are quite the opposite.

All of which is to say, this is complicated. But it is worth it. Cure? No. Quality of life? Fewer side effects? Yes.

If I really believed current interest would make the therapy cheaper and and easier to get I would be celebrating. I know for a fact I would not have had the damage I have if I had early access. So myself, and people a generation before me? We want better for newly diagnosed people, we do not want people to go through what we have. We want that early access, we want people to have their very best chance.

But this pandemic has caused global shortages. Not always directly (Plaquenil) but also due to reduced air freight, redirection of manufacture…

I will be getting my infusion this week, and then 14 days later. I really need them, and am feeling very grateful and lucky to not be moved to a biosimilar (my poor track record means this is probably my absolute best chance.) I’m also currently in a spiral of RA and Fibro- the RA means I have maybe an hour or two every day or two in which I can tidy, or organise, and maybe once or twice a fortnight I can iron and pin fabric.

The infusions do not fix me. But they give me much needed hope, and a little wiggle room to not spend so many hours a day in bed.

It’s also looking more and more like fibro has an immunological cause. Having spent a few years in the fibro zone, and nearly two decades of clear cut auto immune stuff? This is not a comfort. I do hold hope that it means my infusions have a double effect, I really hope so. But it was slightly easier to deal with as an end result of over stimulation of pain receptors.

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