Hair (not the Musical)
I was recently at a meeting that included a number of other RA patient advocates. Over lunch, conversation turned (not unexpectedly) to various treatments and side effects. One of the others, who had long, luxurious dark hair, said, “It’s not fair. I was losing hair by the handfuls from my head but I still had to shave my legs.”
She was talking about her experience with methotrexate (MTX) which is the first medication prescribed for many RA patients. Being young, pretty, and single, hair loss was a non-starter for her and she quickly talked to her doctor about switching treatment plans.
My own experience
Indeed, when I was first diagnosed with RA and started on MTX, my initial search for patient stories resulted in several “hits” about people suffering hair loss from MTX. While folic acid is often prescribed to offset this side effect, MTX is designed to inhibit cell growth including cells causing inflammation but, unfortunately, also hair follicles.1
My first experience with “hair-raising” side effects of RA medications was not with MTX but with Arava/leflunomide. My entire life I’ve had fine, straight hair. In fact, it’s always been so straight as to resist attempts to curl it. Perms wouldn’t take. Hot rollers and curling irons were little to no help — until I started on Arava. The curls started at the nape of my neck. During the course of the four years I was on Arava, the curls slowly moved up the back of my head and eventually covered my entire head. I was miserable. I never learned how to deal with the curls. Fortunately, once I stopped taking the drug, my hair reverted back to its natural straight state. I would have thought this was a fluke (curly hair is not listed as an official side effect) but both other advocates and (of all people) my hairdresser have similar stories.
Now I’m back on MTX along with a TNF inhibitor – Simponi Aria. While fairly infrequent, hair loss is a documented side effect of TNF inhibitors which include major RA treatments such as Enbrel, Remicade, and Humira.2 While I’m on a somewhat low dose of injected MTX, I’m on an aggressive schedule for Simponi. And my hair has started getting thin. I’ve been on all the original (not biosimilar) TNF treatments without issue, but this is the first time I’ve been on both a TNF and MTX, so I think the combination is overwhelming my hair follicles.
An RA medication to treat hair loss?
What’s interesting, Xeljanz, a JAK inhibitor used to treat RA has been found to help people suffering hair loss from alopecia. Alopecia, like RA, is an autoimmune disease, but causes wide-spread hair loss including eyebrows and lashes. Apparently the same mechanism that fights the autoimmune issues of RA also targets those in alopecia.
Side effect frustrations
One of my frustrations with having an “invisible” disease is that it’s not always easy to know if a medication is working. Treating RA is not as easy as putting a lotion on poison ivy and watching the rash disappear. But even though most side effects are unwanted, many are visible indications that our RA treatment is active. Unfortunately, sometimes the side effects are bad enough that we need to make changes to our treatment plans.
If you’re having unwanted side effects from your RA medications, be sure and discuss them with your rheumatologist. There are various ways to make these issues less of a problem while maintaining an effective treatment plan.