I have been taking oral methotrexate (8 pills – 20 mg once a week) since my official diagnosis; that’s 2 years and 5 months as of the writing of this article. Putting it mildly, I have never had an easy time with it, and because my symptoms last longer than the day of/morning after, I have never been on injectable. According to my specialist, my reactions are more than simply my body not liking the pill in my stomach; lasting 2-3 days, not just a few hours or the day after. However, with trial and error, I’ve managed to find a system that works for me most of the time, at least for the last 5 months.
Before I get to the « day of routine », I just want to share some factors that I believe contribute to the reduction in the methotrexate nightmare because they contribute to my overall health.
In general, for the whole of the disease, it is important to take very good care of yourself. The indulgences that make other people feel a little « off » make me feel almost dead. It is sad and overwhelming in the beginning, but it is a reality. If you’re lucky, you’ll be able to accept this quickly and find your equilibrium without too much suffering. If you’re like me, it could take a while for it to sink in and swim past all the naiveté about your health. Having never really been sick up until my symptoms began in 2012, somewhere in my mind, I had superhuman powers when it came to sickness and recovery. Turns out, either I never had them, or they expired. In any case, the reality sets in eventually and it turns out, feeling better trumps whatever « freedom » I thought I was giving up to live a more healthy lifestyle. I even find myself feeling silly for ever having resisted.
If you are interested here are a few of the changes I’ve made/am trying to make so far:
- taking a daily probiotic (this has allowed me to come off of heartburn medications)
- reducing sugar and carbohydrate intake (helps infinitely with the brain fog and fatigue)
- reducing alcohol intake
- replacing sodas with mineral water (helps, but does not cure, the bouts of anemia that started with treatment)
- practicing stress relief tactics throughout the whole of every day (helps with general well-being and energy)
- walking at least 3 times a week for as long as I can. Sometimes they are short 5-10 minute walks, sometimes long 45 minutes and up!
- yoga/tai chi (when the pain allows)
- very light strength training (when the pain allows)
That’s it. There is nothing miraculous or complex about it other than it is a miracle that I’m finding the discipline to do them as often as I’ve managed to so far, and that I am actually starting to see the changes as something that could come naturally at some point. We’ll see in time.
These changes have helped significantly in my over all attitude and do ease (not eliminate, but ease) the fatigue and brain fog that I have experienced since becoming sick. They even seem to increase my « tolerance » for pain levels, allowing me to reduce the OTC NSAIDs. So that means that I go into methotrexate day generally feeling better than I did before the changes; but methotrexate is a real MoFo and won’t be conquered that simply. So here is the routine that has been helping me for the last 5 months:
- Don’t take your folic acid the day you take your methotrexate (check with your doctor/pharmacist before changing your current treatment – I am a patient, not a doctor). Studies have shown that at a minimum the methotrexate cancels out the folic acid when taken the same day, and studies suggest that the folic acid can also diminish the efficacy of methotrexate if taken the same day (keep taking it the rest of the week, your body needs it).
- Take the methotrexate dose in the evening. I take mine on Thursday night because I don’t work on Friday and can use the day to rest/recover as needed before the weekend.
- Reduce or eliminate all together acidic and spicy foods and beverages all day, paying particular attention to what I eat for the last meal of the day.
- Take an anti-nausea pill 1 hour (-ish) before the methotrexate, 5-10 minutes before you eat supper. If you do it too soon or too late, it is not as effective. If over-the-counters (OTCs) don’t work for you, talk to your specialist or other doctor you trust to get something stronger. Since OTCs and normal anti-nausea prescription drugs didn’t work for me, my specialist prescribed Ondansetron.
- Take Ran-Nabilone pill (a synthetic version marijuana) 1 hour (-ish) before the methotrexate. If you are in an area where marijuana is legally available and you aren’t afraid of it, it is more efficient than the pills (also quicker acting if you are vaping it so reduce the time before your methotrexate), but the pills do the job in the absence of the real thing. Don’t forget that Ran-Nabilone/marijuana can make you sleepy and reduce your hand-eye coordination, so if you take your dose in the morning you may not be able to do this step. If you take opioids and/or antidepressants daily, check with your doctor/pharmacist if there are interactions. As a precaution I never mix them; but the Ran-Nabilone/marijuana helps with the pain (nice side effect for a change!) so depending on your pain levels, it might not be an issue to stop the opioids for the day.
- Eat supper (something that you like but that is stomach friendly!) before you take methotrexate and give it at least 30 minutes to digest a bit. That will give you time to enjoy what you’ve eaten.
- Take your methotrexate. If you get anxious about taking it, do something relaxing just before. Anxiety makes the symptoms worse for me.
- If you still have nausea, sip a small can of ginger ale. Make sure it is one that is not spicy and contains real ginger. Don’t over-do it though. Ginger-ale, like all sodas, has a lot of sugar. You can also try ginger pills. They didn’t work as efficiently for me as ginger-ale, but they do seem to work for a lot of people (in general). Warm milk (or hot chocolate) also help with the nausea.
- Go to bed early. If you are not sleepy, watch TV, read a book, play a game, have sex if you are up to it, etc. Distraction is the name of the game until you fall asleep.
- The following day (or 2 if it is a bad week) if the reaction is persistent, take the anti-nausea pills as needed and Ran-Nabilone/marijuana as the day allows (if I need to drive or be 100% I take it later in the day/evening).
- Most importantly, stop looking at methotrexate as your enemy and embraced the idea that it is a necessary part of your treatment plan and it does work. It’s not a conspiracy between your doctors and the pharmaceutical companies to ruin your life. It wasn’t so long ago that there were no real treatments for this disease. Progress will be made, but in the meantime, enjoy the improvements (large or small) that do come with the medications we have available to us now.
Since starting this regiment, my symptoms (including the brain fog, nausea, headaches and intestinal issues) have greatly reduced both in duration and intensity. I don’t attribute it 100% to the regimen. I am sure adding Humira to the treatment and stopping Plaquenil help, but from experience (trying the regimen and varying it) I’d say at least 80% of the « day of » and « day after » improvements are from this recipe.
I hope it helps to inspire you in your search for your solution to the methotrexate nightmare.