In the world of the chronically ill, there is a fantastic sounding phrase called “the drug holiday.” To me, this always evokes images of sun-drenched beaches where all the overworked pill bottles and syringe dispensers go to relax and take a break from the demands of their patients. And maybe another sun-drenched beach where those patients go, free from the confines of schedules and side effects and careful meal balancing and the math gymnastics involved in every Daylight Savings Time switch.
The reality isn’t quite as pretty, but if you are on a long-term medication — or several — that doesn’t perform a life-giving function (keeps your heart beating, keeps your lungs inflating and deflating) and your doc has never brought up the idea of a drug holiday, make mention of it at your next appointment and see what they say. I recently had this conversation with my doc, and we decided together that the month of December would be a good time to take a vacation from my primary medications.
The reasons were several. I’ve been on two of these medications for at least two years without break or adjustment. It’s always good when you’re on maintenance meds to get a periodic baseline of where you’re at without the meds. This is how accurate dosages are achieved. Who knows? Maybe you’ve outgrown the need for that particular med. Or maybe you need to switch to a different one.
Second reason: This fall I started throwing up. A lot. Like, more than 100 times in a single month. Not. Cool. After doing the requisite scans and bloodwork, it seemed likely that one of my medications was the culprit. I’m hitting a certain stage in life that all women like to dread, where my hormones are in flux, and this could be impacting my reactions to my meds. Yet another reason to get a baseline.
And last, I have the sneaking suspicion that perimenopause might not be friends with fibromyalgia. In fact, they might be bitter enemies. But menopause might be the best thing to come along in a long time. How do I figure this out as near to certain as possible, and then have data to present to my docs so that we can make an informed decision as to whether or not it’s time to close up shop on my uterus? Drug holiday! Baselines all the way, baby.
Women’s health, especially as related to hormones, has long been under-studied. We’ve been told that we’re hysterical, it’s all in our heads, we’re being too sensitive to pain, we’re not feeling what we think we are feeling. We all know that’s a load of bull. And the best way we can combat it is to share openly, collect our own data, share that data with our medical providers and with each other, and push for better medical management of our chronic health conditions. Ask your doc about your options, be they new treatments, a drug holiday, a dosage change.
Data is a girl’s best friend, so in the name of data collection, we determined that the first day of my cycle in December would be my first day completely drug-free. I stopped the med I was mostly likely to tolerate being off of a couple months ago, to space out the withdrawals and to have a clear way to monitor which drugs might be causing which side effects. Going off everything at once is generally *not* a good idea. December came along with one hard withdrawal behind me and one med left to go. I went into this with a mix of excitement and trepidation. The idea of not having to time out various meds during the day is, as any chronic pain wizard knows, a seductive one. This is one of the primary reasons that patients go “non-compliant” on their meds — the other being nasty side effects. Especially when you hit a good patch, it is so, so tempting to take a break from the high wire balancing act that is a daily medication regime. Been there, done that, and I can say with some authority that it’s best to do under the watchful eye of a doc rather than vigilante-style. On the trepidation side, I had vivid memories of what it felt like to be in a full symptom flare and oh, how I did not want to go there again.
The best laid plans…well, you know how that story goes. In early December, I found myself going off one drug and going on another. I got Lyme disease! These things happen, and freaking out about it wouldn’t make it better, so…three weeks of doxycycline happened and I documented the data anyway. Funny thing happened. I went off that last maintenance med and on the doxy, and found that I was actually feeling pretty darn good. Turns out that doxy is also an anti-inflammatory, and likely cushioned the withdrawal. Take those silver linings and run with them when you can.
I’m now a week into fully being off maintenance meds and major antibiotics. Hoo boy. We were right. That last med was causing the epic level of puking. Off it, I can eat again! I like to eat, and this is my favorite time of year to eat, so that’s a win. Going forward, I may need to find something else, or I may be able to keep this med, just at a different dosage. I was also right for crediting that med for getting me out of the wheelchair several years ago. After it (and the doxy) cleared my system, it took less than 48 hours to get bum rushed with a return of the widespread nerve and muscle pain that characterizes fibromyalgia. The muscles in my legs tightened up and my balance went to shit, and I ended Christmas — and my birthday — in bed because I couldn’t take the stairs to go down for dinner.
I’m really hoping I don’t have to choose between eating and walking.
Is the drug holiday still worth it? Heck yeah. I’m getting a lot of information that I need to make good decisions about my health for the next few years. I’m learning more about my body and also, my internal strength. A couple years ago, a relapse would have had me sobbing. Truth be told, a couple years ago, that’s exactly what it did to me. But I chose this one, knowing that a relapse was possible, knowing that I’m not cured, knowing that doing this will possibly give me more options.
To all you chronic pain wizards out there, stay strong. Get information. Take a break when you need to, in whatever form that comes in for you. Don’t get stuck in a medication regime that doesn’t work for you. We all know there’s no perfect. There will always be side effects, a balancing act to maintain, and meds that stop working as well as they did in the beginning or just stop working at all. But there’s also more research being done, new developments to check out, and different combinations of meds to try out. Being chronically ill often means talking about the fun stuff: hormones and cycles, pain, bowel movements, drugs…. Aren’t you glad you clicked the link to this blog post? But I think it’s so important to overcome the natural inclination to NOT talk about the awkward stuff and tackle it head on. Confront it, share your experiences with it, get information. Did I commit the cardinal writing sin and say that twice? Let me say it again. Give information. Get information. Collect data. It can mean the difference between being dismissed and being taken seriously. We are our own best advocates.