Tuesday, September 26, 2017
50 Shades of Biologics: My Sick Relationship with Big Pharma
Day two of RA Blog Week
The official topic is "Tips and Tricks," but my main tip is to find a partner like my husband, and that is tomorrow's topic. In the meantime, I will play a wild card and write about drugs.
After fifteen years with RA, I have tried all of the biologics--almost. Some worked really well for me, but never for more than two years. Some didn't work at all.
Before I started each of the last four "miracle drugs," my rheumatologist told me roughly the same thing. He read the list of drugs I already tried and told me there were two remaining options: a new biologic or a drug he almost never prescribes because it can cause some really nasty side effects.
Considering the side effects listed for biologics he's given me (sudden death, anyone?), I am thankful there is always a choice. But I am a bit cynical about where these drugs come from.
Hagfish slime is determined to cure neither cancer nor baldness. It does cause various nasty side effects, so the pharmaceutical company sticks it in syringes and sells it to people with autoimmune diseases for several thousand dollars a dose. Since they can claim it takes months of weekly injections before taking effect (or not), profits are guaranteed.
Big trouble--because, so far, nothing works better for autoimmune diseases than biologics. I've had a few that failed from day one, but most have helped me continue to work, walk, and maintain my will to live. Lab tests back this up. I've hurt more than I've not hurt, but X-rays reveal very little damage to my bones and joints.
I've had less success with the cheaper, more natural remedies so often recommended online. I was a vegetarian for over a year. I went off sugar for six months. I faithfully used the CPAP machine for four months. None of those things made any difference in the constant pain and resultant exhaustion caused by RA.
I am watching, but not pioneering, a couple of odd new panaceas. Fecal transplant looks interesting. More interesting, though no less gross is parasite therapy. The theory is that our autoimmune systems are freaking out because there is not enough genuine work for them to do. People are intentionally getting infected by parasites to improve their health. I read about this in the 2011 book, Wild Life of Our bodies: Predators, Parasites, and Partners That Shape Who We are Today by Rob Dunn. A more recent update can be found in this New York Times Magazine article.
In the meantime, I trust that by the time Cimzia stops working for me, fermented narwhal horn will be available under a meaningless name at exorbitant prices.
The accomplishment this week is the border. It makes the shawl a little bigger and a little more shawl-shaped. The yarn is a lovely merino/American bison blend.