Updated as of Summer 2019: here’s what I’m taking for my MS and what I think of it. I know a lot of my readers want to know about the medications and therapies I’ve used along the way & how they’ve worked out, and I’ll start linking those posts here, too. A few disclaimers, before we get started:
I’m not a medical professional: this is all anecdata. I hope it’s helpful anecdata, but it’s not medical advice. GO TO YOUR DOCTOR FOR MEDICAL ADVICE. If you want to know what the experience of taking a med is like- how it feels, what the day to day is like? I’m your huckleberry, sugar. That is me, all damned day. If you want to know if a drug is right for you, though? Doctor up.
Also; my treatment plan is not up for debate; it’s between my medical team and myself. I’ve chosen to share this information here because folks wanted to know about my treatment plan and more specifically, what has and hasn’t worked for me. I share that because I feel like it. It’s a nice thing I do voluntarily. I’m not doing this to solicit advice: I’m sharing an experience and I’m sharing it for the benefit of other people who experience multiple sclerosis. I give suggestions that I radically alter my current plan all the attention that they deserve. You don’t want that attention, friend. Let’s be cool together.
Okay, let’s get into what I’ve got going on for meds and supplements right now.
Tysabri: This is my current primary disease-modifying drug; I’ve been a Tysabri patient since fall of 2017, I believe, and it’s going excellently. Tysabi is an infused medication, so I go into an infusion center at a hospital monthly and sit in a room for a few hours to receive this med- that’s it, that’s all, nothing else to think about, really- or forget. It’s like the world’s least desirable spa treatment. Folks tend to react really dramatically when you start an infusion medication- I think that’s because outside of chemo, most people don’t have any experience with infused medications- but it’s not a treatment of last resort, infusion center nurses are the best at inserting IVs (I used to be terrified, now I make small talk), and there’s Wifi.
Fatigue, foot drop, and cognitive fog is down, fasciculations are up but dismiss-able, and the community aspect of the infusion space really can’t be overstated. There’s benefit to being in touch with a specialized care team every month, sure, but the network of infusees contains decades of lived experience, experimentation, and knowledge. We aren’t just good at MS: we tend to be good at quite a few of life’s Hard Things, and it’s comforting to be in a room with these folks for a few hours each month.
Provigil/Modafinil (200mg): Oh, friends, this medication. It’s primarily used for narcolepsy, but off-label it’s also a neurologist’s secret weapon against MS fatigue and holy cats, it WORKS. No jitters, no nausea, it just does its job. When my neuro, who also has MS, took me off Amantidine (which did nothing for me) and put me on this I was shocked at quickly I felt like my old self again. Now that I’m taking Tysabi, I only tend to take this a couple of days before my infusion, when I tend to sort of drag along, on on rough days, which are pretty infrequent lately, and I only need half a pill. There is also a really fascinating history behind this drug (it was developed in WWII by the military to enable pilots to fly long missions over the Pacific without falling asleep).
Gilenya: Discontinued, July 2017. Gilenya was my primary disease modifying medication for the last 4 years. I’m currently flushing it from my system. I’ve been on this since July of 2013, and so far, so good. Anyone who goes on this needs a cardiac pre- screen, which is a bit of a pain in the ass- it’s a full day in a doctor’s office/ clinic- but it’s got a black box warning, so it’s worth the time. The only side effects noticed were mostly in the beginning; mild headache, a slight uptick in my blood pressure (not a bad thing, naturally run low) and some nausea, most of which went away after I moved my dose from AM to PM. The blood pressure held, but is non- problematic/ a potential improvement. Went off this med in July 2017 in favor of starting Tysabri this fall with the hopes of regaining some lost function.
I’d been on Copaxone before switching to Gilenya and had been experiencing one relapse a year, each spring. I have had no relapses since switching to Gilenya, although I have seen some symptom progression. That is normal for RRMS.
Baclofen/ Lioresal: I take 10 mg of Baclofen in the morning, 30 at night, with additional 10 mg tabs kept on my person as occasional “touch ups” as needed. It helps a lot with the hamstring, back, and foot spasms. This is my workhorse muscle relaxer. Nothing at all like Flexeril or what most folks think of when they think of muscle relaxers; it took about three days to get acclimated, but this never made me feel the way an “injury” relaxer does.
Topamax/ topiramate: migraine prophylaxis, also pulling double duty as my as a seizure preventative. Highly effective for me and I do recommend it with a boatload of caveats; please make sure you’ve given other options a solid shake, understand the risks, and if you’re after it for weight loss you’re an asshole: 90% of people only tend to lose 10- 15 pounds on this medication, it really isn’t worth it and that studies show that when used for weight loss the weight will come back. If you’re legitimately on this med and are considering going off in the first couple weeks because you’re seeing trails as doses wear off, you’re tongue- tied, or you can’t stand that weird carbonation thing— if you can stick it out to week three, it really does get a LOT better, and the way it works for chronic migraine as well as atypical & some visual migraines is pretty amazing.
I still dance around the idea of getting off of Topamax via Botox migraine injections, except Botox = botulism toxin and I JUST CAN’T, that’s literally injecting poison into my FACE, and also my face would become somewhat frozen which gives me even more of the weirds. Topamax really works, too: I’m not in daily pain from migraines any more. It’s got a risks, too, though- some folks experience suicidal ideation/ intrusive thoughts (this happened to a friend of mine), it can cause seizures; it’s getting into your CNS, so it’s no joke.
I know I’m making this sound like the Suge Knight of migraine medications, but it sort of is— super- effective, but damn, you really want to avoid working with it if you can. If you can deal with the idea of Botox, that really might be the better option. I’m genuinely torn on this one. It also helps me with seizures, though; I’d need to look into an anti- convulsant were I to discontinue this, so that contributes to my decision to keep taking this medication.
Vitamin D: 2000 IEUs daily, textbook MS stuff. There is a lot of research connecting low levels of vitamin D in childhood to adult MS. I get my levels checked every neuro visit and I’m consistently normal now, but sure enough, I tend to run low without supplementation. I can feel the difference if I skip these for a week.
Fish Oil/ Omega 3: I don’t actually care where the Omega 3 and Omega 6 fatty acids come from, although it’s usually fish- if I run out, though, I’ll swig some hemp seed oil until I can get to the store, because lazy slag and also available. I am one giant internal shrug, y’all. Omega 3 and Omega 6 fatty acids are huge for MS, as well as good general brain/ skin / joint/ hair health. Two a day, every day. They make some that aren’t fishy, I promise. This is a good idea for everybody.
Vitamin B6 & B12: I have no idea on dose! I just grab whichever Vit B combo is on the shelf and doesn’t have other crap mixed in. My last neuro at Hopkins recommended it for fatigue and it seems to help. It also turns my urine a frighteningly bright yellow so I always know if I’ve forgotten my morning meds which I find extra helpful, and is the real reason I keep taking it. HONESTY HOUR. (There’s a really cool white paper on the direct relationship between B12 & MS here, including a theory that patients may wind up additionally stripped of B12 via primary & secondary therapies.)
Celebrex/ celecoxib: Discontinued, 2017. Medical marijuana, CBD, and Tysabri are pretty great to me, kids. This was a pain medication that I took for a few years, and it was a steady pain med for while I used it. It didn’t stupefy me, and it also didn’t shut off all my pain, so I still felt like I knew what was happening in my body; I know that sounds less than ideal, but that’s how I like things. My cardiologist tells me I have the heart of a 20-year-old, but I like to avoid cardiac warnings as much as I can; I have a cardiologist, first off, and my family history is pretty crap.
Medical Marijuana: A note: medical marijuana (aka MMJ) activists run the gamut from super- legitimate to “marijuana will cure everything“. Medical marijuana, like coconut oil, is pretty great and can be used for a lot of things, but it definitely doesn’t cure everything. It is great for pain, though, especially neuropathic pain. Vaped or injested, a sativa or hybrid provides a light, steady amount of pain relief, and dosed correctly I can still think straight. (I know how to dose myself correctly, but there is a learning curve.)
For me, I’ve found cannabis works well for muscular pain (especially spasm), migraine pain (this is why I originally began to use this medication, and it’s incredibly effective for that pain in my case), appetite stimulation (I no longer weigh 89 pounds and this has a LOT to do with that, go THC), and insomnia (use indicas/ indica- dominant hybrids for this, sativas tend to stimulate). I know it sounds unlikely, but for those who haven’t had any experience with medical marijuana before, it’s totally possible to use this medication without feeling intoxicated. I use this every day. I tend to use a LOT of CBD, honestly, in tandem with THC- don’t get me started, it’s a whole ramble, but my goal is comfort and function, not intoxication.
If you meet me in person and you’re wondering if I’ve used MMJ that day, it doesn’t really matter, but it’s totally okay to ask. I know there’s a lot of curiosity around this subject in particular and I don’t mind talking about it. If I have car keys in my hand, you don’t need to ask: I’m sober. I’ve probably consumed something with CBD in it, though. Other than that, though, it’s totally possible; I address my pain as it comes. I make a lot of jokes about being a stoner, but I think that’s a way for me to give voice to fears of being perceived that way. It’s an easy way for folks to dismiss me, and while it does happen on occasion, it’s a lot less than I’d thought it might, which is really nice.
Zanaflex/ tizanadine: Discontinued. 4 mg, 3 x daily. Adding this to my daily mix really made a difference in 2015, when I was having foot spasms & hamstring cramping— really deep, charlie- horse sorts of activity that would last and last. Magnesium supplementation and PT was great, but this was what finally broke through that wave. Be warned, it takes about a week to get used to this— give yourself about an hour after your first few doses before doing anything that requires focus. UPDATE: discontinued in April 2016, as I didn’t think I needed it any longer. Titrated down over the course of two weeks; going off was uncomfortable but otherwise pretty easy. Raised my stretching and PT massage to compensate, and found that after about a week off the med entirely I was fine.
Requip/ ropinirole: Discontinued. My PM “muscle relaxer”, this keeps significant muscle spasms from waking me at night. I’m considering going off of it lately, but it was really helpful in 2015 and I’d use it again. Great for spasm in large muscle groups, but high on fatigue and consistently intoxicating; nighttime use only. You do need to taper on and off, and it’s got some significant warnings- research this one before use. UPDATE: Discontinued in May 2016. I felt it was extraneous; tapered off w/ doctor assistance. Even after extended use, the taper was easy, so I still recommend this one.
Amantadine/ Symmetrel: Discontinued, July 2017. I can’t tell if this was doing anything for me any longer or for the last six months. Meh. We are trying to get my insurance to approve Nuvigil as a replacement. Generally used to prevent Influenza A, this has an off- label use for fatigue in MS. I take 100 mg once to twice a day, depending on the day. It works without making me feel jittery, sick to my stomach, or anxious. It’s been about two years now and outside of the pill itself being this weirdly alarming bright red, no issues. It’s nice that I would be able to find this if I dropped it on the floor, I suppose, but it really is a very angry little red pill.
So there’s the rundown, friends. Feel free to ping me with questions, and if you’re a patient I’d love to know what has worked for you- I’m always very interested in other experiences. Patients and caretakers, these posts are for you; let me know if there’s anything else you’d like to know/ hear about.