I have been back on methotrexate for about 5 weeks now since my appointment with Dr. Rheumy last month, save for a week that I skipped because I was working 11 days in a row and wasn't sure how I would be able to do so in the MTX fog. During both periods of time when I discontinued my therapy, I had all but forgotten what the nausea and fatigue are like, until I started it up again. For me, the side effects are comparable to the nausea and fatigue of early pregnancy; I have heard of some patients who have little to no side effects, and others who are stricken with full-on vomiting, or who spend the better part of the day following their dose in bed, or both. I also get mouth sores, occasional lower-GI side effects, and have noticed that my hair sheds like crazy.
This time, in an effort to reduce my side effects, I decided to a) become more consistent in taking my folic acid and b) try an alternative to just taking Folgard, which contains 800mcg of folic acid, in addition to B-6 and B-12. This Medscape article has a brief explanation about folic acid supplementation in patients on low-dose methotrexate therapy, defined as less than 20mg/week. I personally take 15mg/week: low-dose in relation to the doses used in cancer patients, but a moderate dose for an RA patient. As far as I know, the higher end of the range for RA patients is 20mg/week.
I am not very good about taking my vitamins and supplements every day, so my folic acid supplementation basically consisted of taking a Folgard whenever I actually remembered that I should. Some doctors and researchers advocate taking a higher weekly dose of folic acid (5mg or more), rather than a lower daily dose (usually around 1mg). There is an article in Rheumatology (The British Society for Rheumatology's official journal) that recommends 5mg of folic acid the morning after MTX is taken.
After coming across this article (and actually, it was J.W. who came across it, not me), I decided to get myself one of those daily pill boxes and change things up a bit. I've been taking Folgard every morning except for Tuesday, then my MTX on Monday night, and 5mg of folic acid Tuesday morning. I didn't realize how beautifully this dosing schedule was working for me until I didn't refill my MTX in time to take it this past Monday. Instead, I picked it up on Tuesday morning, took it before lunch, and waited to take the 5mg of folic acid until this morning.
The larger dose of folic acid hasn't been eliminating the side effects completely, but they have been more like a brief annoyance - a little nausea that is cleared up by some ginger ale or hard candy, a bit of fatigue that prompts me to have an afternoon cup of coffee if I have to work that night. The lower GI side effects are few and far between and my mouth sores haven't been as bad, though I'm still shedding like a dog. From just going the extra 12 hours between when I would normally take my folic acid (in relation to my MTX dose) and when I actually took it this week, I have be given a harsh reminder of what the MTX side effects are normally like for me.
I was feeling okay around lunchtime, when I ate some chicken tikka masala that was left over from our lunch at Whole Foods yesterday. A couple of hours later, the nausea kicked in, and now my stomach is turning at the mere thought of Indian food. I spent the late afternoon/early evening hours curled up on the couch, dozing on and off while the kids piled blankets, pillows, and stuffed animals on top of me. The only other thing I could fathom eating was either a grilled cheese sandwich or broccoli and cheddar soup from Panera; I opted for the latter with some sourdough and while it was good as I was eating it, now I feel sick again.
I don't think I will ever mess with when I take my folic acid again - my conclusion is that I need to take the 5mg right around the 12 hour mark after I take my MTX, for it to kick in quickly enough to minimize my side effects.
If there are other RA patients out there reading, do you supplement with folic acid when you are on MTX therapy? If not, how are your side effects? If so, what is your dosing schedule? Have you noticed whether it makes a difference in how you feel?
On another note, I haven't started Enbrel yet. I was told by the university where I'm taking my prereqs for nursing school that there is only one MMR vaccine on my immunization record, and NY State requires two if you were born after 1957. I'm pretty sure that I have had two, considering I went through 13 years of school without it ever being an issue, but until I sign a form to get my medical records out of storage and show that I did have both shots, I need to treat things as if I am going to have to get an MMR vaccine soon. Since biologics can greatly impair the immune system and the MMR is a live vaccine, I can't get it while on Enbrel and can't start Enbrel until 6 weeks after I've been vaxed.
I'm really hoping the Enbrel doesn't bring on a whole new slew of side effects to deal with.