Like most patients with chronic illness, part of my support network are folks I've never met who belong to Facebook groups about my illness. I belong to several about psoriatic arthritis. I see many questions about what to expect from Methotrexate. Hence, I have decided to share my experience with this drug.
These pill-figure photos are popular in the Facebook groups. Mine is constructed of vitamins, supplements and Methotrexate.
When my rheumatologist first suggested Remicade and Methotrexate, I was worried about the risks associated with these drugs. I was worried that Methotrexate, a low dose of chemotherapy, would leave me nauseated, exhausted and bald! What I found was that, together, these two drugs helped me achieve remission after my fourth dose of Remicade. My hair loss has not been troublesome. I supplement with Biotin and have found this to help. That is the good news.
Upon the advice of Crystal, my friend with rheumatoid arthritis, I take my Methotrexate with dinner. This way, I sleep through much of the fatigue and nausea, and experience slight gastrointestinal distress the morning, which usually resolves before I have to leave the apartment for work.
The most annoying side effect I have experienced is a propensity to heat exhaustion. Of course, this does not affect me all year, but warrants much attention from June through September in New York. I can be outdoors, suitably covered up in lightly colored, cotton clothing, and the symptoms of heat exhaustion will come upon me all at once: shortness of breath, feeling overheated, panting, spotty vision and generally feeling as if I am about to die. I go from zero to ill in a matter of minutes. Getting inside with air conditioning quickly, some ice to cool the skin and cold water to drink help immensely. Over time, I have learned to shorten my time outdoors on very hot days and to get inside quickly once the first symptom shows.
Last year, my husband and I cruised to the West Caribbean for Super Bowl weekend. The game was played in New Jersey and both teams were staying at hotels in Jersey City, where we live. Wanting away from the craziness and the winter, we headed for sun and rest. Concerned about passing out in the sun and heat, I discussed lowering my dose of Methotrexate with my rheumatologist. He suggested I dial it back slowly to see how little of the drug I could tolerate without a change in my pain. This did not go well. After only a week and taking one less pill, my tendons were burning with pain! So, instead, we decided that I would avoid excursions with prolonged sun exposure, purchased a sturdy umbrella with reflective properties to keep the heat away and wing it. I could always return to the ship and the spa if I became too uncomfortable. This worked like a charm. And, I learned my lesson: Remicade is wonderful, but does not deserve all the credit for my remission. I cannot do without my Methotrexate.
If your doctor suggests this drug, don't be afraid to ask questions. Not every drug works for every patient. I hope if you have been as afraid of trying Methotrexate as I was, this post will reassure you. Until next week.