Surviving Methotrexate Day

Surviving Methotrexate Day

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)

methotrexate 20 mgThat’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:

  1. 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).
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. Take your methotrexate. If you get anxious about taking it, do something relaxing just before. Anxiety makes the symptoms worse for me.
  8. 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.
  9. 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.
  10. 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).
  11. 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.

J.L. Munn

10 thoughts on “Surviving Methotrexate Day

    • Author gravatar

      Thank you for your information on Methotrexate. I started having symptoms before 2009, but 2009 when I realized something wasn’t right. Started the diagnosing process in 2010. Was given the diagnosis of R.A. in 2012. And several other diagnoses as well.

      • Author gravatar

        I’m glad you find the information useful. R.A. is a particularly difficult disease because is it so incredibly specialized to each individual. There is a lot of trial and error to find the exact right cocktail for you. My heart goes out to you and I hope you find a balance that works for you too.

    • Author gravatar

      I am on subQ methotrexate. My new rheumatologist recommended taking mucinex an hour or so before doing the injection and again the next morning. It is the dextromethorphine in the mucinex that helps with the MTX hangover. It works, I’m not sure why but it does.

      • Author gravatar

        Sometimes the treatment of the side effects can feel a lot like we’re doing random magic without any explanation. It’s great that you found something that works for you! It’s a hard enough disease on its own. When we can get relief from the side effects of the treatment it makes a world of difference. Hang in there!

    • Author gravatar

      Hi I would really like to share my journey wih RA in the hopes that it will encourage you. When I was diagnosed the rheumatologist thought I had already had it for 8 years. I was immediately put on methotrexate. I was a first grade teacher at this time was already suffering sleeplessness and depression. This was a very difficult time in my life. My rheumatologist wanted to put me on Humera but was not allowed to until I had had all the other treatments. I know now that it is because it can be dangerous. It took a long time but finally I was allowed to be given Humera. I had to inject myself in my tummy once a week for 6 weeks. This put my RA into remission.Unfortunately this excellent rheumatologist emigrated and my new doctor wanted me to continue taking methotrexate indefinitely .All the medications I was taking now was having a huge toll on me. I went to an intergrated medical practioner who fully tested me and slowly weaned me off all the drugs that were continuing to make me feel unwell. He prescribed Glucosamine, Kaprex and all the vitamins and minerals to build my body up. I got my life back! I have continued to take the things he prescribed and went back numerous times to test the status of my RA and I have continued now to still be in remission. I had the Humera in 2009. I have stopped taking anything for it as I am confident that I am healed. I always asked myself “how and why did I get RA.” I am 64 and it has taken me all this time to understand that I was emotionally abused by
      My mother and two older sisters. After completing high school I suddenly had an allergic reaction to penecillin which I had not been prescribed for many years. When your body is subjected to attack it starts to overprotect itself. For the next 20 years I lived and raised my family diagonally on the other side of our country. I kept up the relationship visiting and seeing them all often. Then they all came to live where I was and I think this is exactly when my RA started. My mother and eldest sister had narcistic personalities and my sister could not see me as making a success of my life. She systematically alienated everyone from me. My other sister had always been her enabler. My mother died and my eldest sister lives on the other side of the world. My other sister lives near by but continues to stick with her handler. So now I am feeling very confident that my RA is a thing of the past. I hope my story will encourage or help someone else who is maybe going through the same thing I did.

      • Author gravatar

        Thank you for sharing your story! RA is a particularly cruel disease and highly personalized to each person. I’m so glad that you found a recipe that works for you!

    • Author gravatar

      Hi- I just found this and read through. I appreciate you telling how things have worked or not for you. I have read about the folic acid being avoided the day of methotrexate and asked my RA Dr about it. She told me it was fine and to continue. I am injecting methotrexate weekly rather than the pills and it is better for me.
      I have been inconsistent with exercise but am working to do it daily- motion is lotion – I do feel better when I am active- I need to make it a daily activity. Mediterranean Diet has been helpful also. I am 66, diagnosed 5 yrs ago. Thanks again, Robin

    • Author gravatar

      I read this just becsuse my sister was on methotrexate at one time. I’m so sorry you’re going through this.

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