Updated as of Summer 2016, 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 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 essentially anecdata. Helpful anecdata, I hope, but 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. 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.
Gilenya: Gilenya is my primary disease modifying medication. 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.
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 20 mg of Baclofen three times a day, with additional 10 mg tabs kept on my person as occasional “touch ups” as needed. At this time, I’m routinely taking an additional 10mg at bed, which helps a lot with hamstring 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 a three days to get acclimated, but this never made me feel the way an “injury” relaxer does.
Zanaflex/ tizanadine: 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: 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.
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.)
Amantadine/ Symmetrel: 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.
Celebrex/ celecoxib: Pain med! I have some Tylenol 3 for emergencies, too, but I never count that, as I hardly ever use it and it really doesn’t seem to work for me. This, though— this is steady. We’ve backed down to 100 mg twice a day and it’s going well. This is a solid NSAID and it works well for my daily pain. I’m still able to check in with my body, and this doesn’t go anywhere near the neuropathic pain so I also don’t feel as though anything has been put on mute. It doesn’t have the stupefying affect that I saw with gabapentin, which did hit that neuropathic pain; I wonder if that’s connected? Either way- there are some cardio warnings I keep an eye on, but it works without turning me into a potato, which is perfection in my book.
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 really good 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.
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 haven’t. 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.
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.