Switching to an Oral MS Medication Is a Hard Pill to Swallow
Fed up with painful shots, columnist Jamie Hughes considers making a change
In one of my favorite scenes of the 1970s movie “The Goodbye Girl,” Paula McFadden (played by Marsha Mason) begs Elliot Garfield (played by Richard Dreyfuss) to quit playing the guitar late at night when he can’t sleep.
“Have you ever tried pills?” she asks, to which he replies, “I don’t know how to play pills.” The reason? He is “a person of health” who does not “put unnatural things in [his] body.”
That line has always stuck with me. I don’t know why. I mean, the movie is a comedy, for heaven’s sake. In fact, the scene ends with Elliot telling Paula to “take two sleeping pills and stick one in each ear.”
But oftentimes, his words come to mind when I’m popping capsules for a headache or swallowing birth control to keep myself from getting in the family way. After all, as person who deals with multiple sclerosis, I already have a lot of wonky stuff going on inside my body — best not to add to it unnecessarily, right?
Soon after I received my MS diagnosis, my neurologist put me on Copaxone (glatiramer acetate injection), and I’ve had fairly good luck with both the 20 mg/mL and 40 mg/mL varieties. I’m profoundly grateful for that; however, I’d be a liar if I said I wasn’t sick of being a human voodoo doll. The shots are sometimes painful, often for days at a time, and the reactions I sometimes experience are still terribly uncomfortable.
To switch, or not to switch?
So I decided to talk to my doctor at the Atlanta Neuroscience Institute (formerly the Multiple Sclerosis Center of Atlanta) about switching over to an oral medication to manage my disease. He recommended two — Vumerity (diroximel fumarate) and Aubagio (teriflunomide) — and sent me home with some literature to review. I also had to have some bloodwork done in order to check my liver function. The first round of tests came back, and my numbers were ever-so-slightly elevated. So I’m having the tests run again at the end of this month.
I’ve read the information my doctor sent home several times over, and I’m still a little unsure about making the switch. Some of the side effects, which mostly impact the liver and gastrointestinal system, still have me doing my best Chrissy Teigen grimace impression. Also, both can reduce white blood cell counts and increase the risk of infections, and, perhaps even more worrisome for me, both may cause hair loss, something I’m already dealing with. (I know it’s vain. Sue me.)
But the fact of the matter is, unlike Elliot Garfield, I don’t have the luxury of avoiding medications altogether. Like him, I am “a person of health,” or at least I try to be. I eat a vegetarian diet, work out four or five times a week, and try to keep my stress levels low and get plenty of sleep. But MS has made this decision for me. And that, as they say, is a hard pill to swallow. All I can do is find the best medication for me, one that allows me to maintain a solid quality of life.
At the moment, I’m leaning toward Vumerity because, according to MS News Today, “Additional findings from [the EVOLVE-MS-1] trial also demonstrated that switching to Vumerity from previous disease-modifying therapies, particularly glatiramer acetate (sold as Copaxone among others) and interferon-based medications, was safe and associated with reduced relapse rates and active brain lesions.”
No, it’s not perfect. No medication is. There are always risks to consider and side effects to endure. However, I would love some more information from fellow MS warriors! So, if you’re a relapsing-remitting MS patient and are taking either of these treatments, tell me about your experience in the comments. Is there something you wish other folks knew about your “drug of choice”? Any tips for dealing with the side effects? How effective has your treatment been? I’d love to hear your stories, and I bet other readers would, too.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Patti Cheney
I was on Copaxone for 17 years. I eventually tired of enduring the side effects and switched to Tecfidera. I have been pleased with Tecfidera except for the first month. That was rough. Since then, no side effects or problems. I passed on Aubagio because of the potential for hair loss, I too am vain.
Jamie Hughes
Would you mind sharing what was rough about the first month? I have zero ideas about all this, and I need to learn from the real experts. I can contact you via email if you'd rather discuss in private. :) I'll look into Tecfidera too. Thanks for the tip!
Patti Cheney
Please contact me via email.
Jamie Hughes
Will do!
Sandi
I also made a change in MS medication after being on Copaxone from 2000 to 2020. My doctor gave me options and I chose Aubagio. I was so happy to switch from a daily injection to a daily pill that I overlooked reading 'hair loss' as one of the side effects in the brochure. For the first 5-6 months I endured a slight headache 24/7 that eventually resolved. Reading your letter and learning about the potential for hair loss with Aubagio gave me a moment to pause and reflect. Because of the pandemic and inflationary prices, I also switched out my haircare products for cheaper versions more than a year ago. I don't remember when I first started noticing an abundance of loose hairs while shampooing but I always dutifully collected them in my hands and stuck them to the shower wall to prevent them from going down the drain. Three weeks ago I removed the pop-up plug from my shower and put a hair catcher in its place. Surmising that my shampoo was damaging my hair, I most recently replaced my hair products with natural ones that are somewhat pricier. I am on notice now though, so if I don't see significant improvement in lost hair in the next couple of weeks, I will be contacting my doctor about changing my MS medication once again.
Claudia Heilke
I took Vumerity for a little over a year and had 5 bladder infections during that time. I had never had a bladder infection before that. When I stopped the Vumerity the bladder infections stopped . . . immediately.
Jamie Hughes
Ooooh. That sounds like zero fun. Thanks for sharing that with me. Were you infection-prone before? I saw you said you'd never had a bladder infection, but I was wondering. I can contact you via email if you would rather not share that info here. :)
Sue Pye
This is a great conversation and I am interested in hearing people experience in leaving Copaxone. I've been on it for three years and have shifted to injecting only my tummy. Vanity and pain limited the other areas where I either hit a nerve in my arm, started to get fluid build-up on the low back and then hollow divots in my thighs. It's easier to feel like one area of your body isn't so great, versus everywhere but your elbow! That being said, I guess it's working, kinda. I had one long sensory relapse last year, which was painful and am still on Gabapentin (which I am so grateful for). Anyway, please keep the info coming. Thanks!
Jamie Hughes
Sue, I had to quit using my stomach because the injections caused a superficial ulceration! See the column here -- https://staging.multiplesclerosisnewstoday.com/columns/2019/09/06/ulcer-injection-site-reaction-infection-treatment-pain/
I've hit the nerves too, and it sucks big time. I've also had that reaction where it takes my breath and I burn/sting everywhere. So so blech. Thanks for telling me your story, and I'm glad gabapentin is proving useful.
Sue Pye
Hi Jamie, Wow, your article describes quite the ordeal! Thank you for including it. I hope you recovered fully. This is especially timely since I am seeing my Neurologist next week. Thanks!
Jamie Hughes
It was an ordeal to be sure, but I learned a lot from it. (And I don't use my stomach as an injection site anymore, which is a bummer because it was the easiest site to reach!) Glad my painful lesson can be of use to someone. :) Good luck at the neuro next week!
Vanessa Lipstein
Hi Jamie,
I am very curious as to which medication you went with. I too was on Copaxone after my diagnosis, but began having shot day reactions which turned into two bad days and one good day on repeat-this wasn't living life. I tried going without medication and focusing on diet, chiropractic, stress reduction and good sleeping habits which was working well for me while I was in a bubble but the outside world found its way in. My most recent MRI was humbling and I am back to the drawing board with medications. I tested positive (a very high positive) for JC Virus so it limits my options and I am still dreaming of a child in my near future which has me going round in circles about medications and safety and all the things (hello to that stress I've been trying to manage!). I'm considering Briumvi, Kesimpta and Vumerity but don't love the options to be entirely honest. I feel like anything other than going back to Copaxone (lumps, breathing issues, burning, freezing for hours after panic attacks and then the joy of hitting a nerve-the last two being the only infrequent reactions) is equivalent to me waving goodbye to motherhood.
I hope whatever you've decided has you healthy and happy!