Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
I always took my MTX on a Friday night so that I could have the weekend to recover before work on Monday. I would also take Leucovorin which is a high dose folic acid the next morning (12 hours) after taking MTX. The high dose folic acid is to protect the brain from the effects of MTX. I would always take MTX with food and two large glasses of water. MTX will cause dehydration, so I would drink lots of water during the week. The high dose folic acid did help me to feel better too.
My doctor had to adjust my MTX dosages during my three years on that med. I do think if you are feeling bad, then consider discussing adjusting the dosage amount of MTX with the doctor. I took 17.5 mg and did well. I later moved to 20mg. MTX hangs around in the body long after you stop the med too.
I know that many people will be able to give their experiences with MTX too. All of the different DMARDs require some time and adjustments to work well.
I moved from pills to injections because I just couldn't tolerate a high enough dose without feeling totally crappy for 3-5 days. With the injection, I take the day after the injection "off". Some times, I sleep all day. I usually don't have a ton of energy. And sometimes I wake with a headache. Food often doesn't smell good nor taste good. I've found I have the toughest time with protein. Beef or Chicken seem the worst. They smell and taste rotten to me even though I know it is perfectly okay. So I just don't eat it. Or I have it in a sauce like spaghetti or such. I eat lots of fruit and veggies because they taste really good. I take 5 mg of Folic Acid that night after my injection. The icky feeling is usually gone by the next day but if not 100%, it is usually way better the day after that.
I typically take my injection on Saturday nights. I lay around Sunday. Then I am back to work on Monday. Usually Monday or Tuesday I am back on my feet. I have found the side effects have gotten better the longer I take MTX. So if you can, and it is helping you, stick with it.. It will get better but will probably take awhile.
I would talk to your doctor about how you are feeling to see if they have any ideas. When I first started, I was given an anti-nausea medication that helped me with that. Unfortunately, it made me sleep non-stop. I don't usually have that luxury for more than 1 day a week.
Good luck and let me (or any of the smart people here) know if we can help further.