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.

A friend with more faith than me likes to believe that everything was created for a reason. She looks at sea horses or hagfish when we visit the aquarium and suggests  they may contain the cure for cancer. My imagination runs a few steps further . . .

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.

The horrifying prices do suggest lack of caring for patients. But they try to make us feel otherwise. I'm currently getting my liquid gold for free under a "copay assistance program" through the manufacturer. This is working fine for me now. My insurance company is paying lots of money and the drug maker is making lots of money, but I don't have to see it. Unfortunately, this will only work for one more year. After that I lose my Cadillac health care plan and probably go on Medicaid. Big Pharma doesn't offer copay assistance for Medicaid or Medicare patients. I will be in trouble.

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 KNITTING


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.

2 comments:

  1. You sound like me, always trying something new. :)

    Your shawl is gorgeous!

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  2. Thank you so much! I hope we both find something that works long-term.

    ReplyDelete