Monday, June 3, 2013

Night and day (or is it Jekyll/Hyde) battle with chronic RA pain

This whole methotrexate journey to treat my rheumatoid arthritis has been so bizarre. I'm on week 7 now, and I've upped the dose to six 2.5 mg pills once a week after my rheumatologist cleared me because tests showed my liver was tolerating it. Took higher dose on Sat night. It made me so sick, sore all over, with chills and fatigue Sunday (I must have slept 12-14 hours), moody and blue, etc.

And last week was abominable. I only had one good day (Friday) out of 7, and had severe edema (swelling) in both of my legs, always much worse in the left leg. (That leg has always been problematic re: edema since the now-surgically-corrected herniated disc. No one knows why it's occurring -- I asked three different docs.)

So I was asking myself last night -- why do I want to keep on trying this medicine? I have to have patience because it takes 8 weeks or so to kick in, unlike some of the biologics (Enbrel made me sick for two days, but I felt spectacularly better within 5 days).

The good weird news

Anyway, I wake up today and the debilitating bad joint pain has abated (pain level is only around 4 out of 10)! And it's a pretty rotten weather day -- thunderstorms overnight, with rainy, humid weather today. That usually kills my joints, but I feel unusually unaffected. Maybe methotrexate is now kicking in. I can only hope.

If this relief holds through the rest of the week, that will be a good sign. It will mean only about 1.5 days of being sick from the med and the rest of the week with much less pain.

I'm not trusting the med at all yet -- and many people with RA have this love-hate relationship with methotrexate.  I gained some insight and solace from reading the entries at Rheumatoid Arthritis Warrior:
The most commonly reported side effects for the RA-sized doses are digestive irritations. This can range from mild nausea to severe vomiting and diarrhea. Hair loss is also possible, but with lower doses it is less common. Methotrexate can also cause a feeling of weakness which is referred to medically as malaise. I call it that “I’ve been kicked by an elephant” feeling. (I really was kicked by an elephant once… but that’s another story!)

Other common side effects of methotrexate include increased risk with infection and greater chance of sunburn, either of which may also be more severe with methotrexate.

Well, methotrexate side effects do sound harsh, don’t they? However, when was the last time you read a list of the effects of RA? Seriously, the list of Rheumatoid Arthritis symptoms is eerily similar. For the most part, RA is undoubtedly worse.


  1. Hey Pam, do you take folic acid with your methotrexate? And maybe some milk thistle for your liver? My wife was prescribed both by her rheumatologist.

  2. Dylan, yes I take 1Mg Folic Acid daily and have had no ill effects from the MTX in that regard. Do not take milk thistle though. What is that supposed to do?

  3. I found it difficult to take methotrexate in pill form. For 25 years I have been injecting it in the evening near bedtime. Then I feel a mild effect in the morning - like a hangover for as few hours, though I drink so little I forget what a hangover is like.