I need to talk.
I have had RA since Nov. 07. Started off severe but has leveled off to the point that 20 mgs of MTX keeps me functional and not in a great deal of pain. My blood work is always good-no elevation of inflammation markers and I am sero negativie. I do have pain every day and some days are worse than others but its rare that I take a pain pill so how bad can it be? I do feel tired and complain to my doctor about it.
So he got tired of hearing it and said in December go off the MTX for a couple of weeks and see if it makes a difference with your fatigue.
So I did and it didn't and I never went back on my MTX.
Why you ask? Well - my doctor has been so busy telling me how wonderful I am doing (when I don't feel like I am really) and saying I am in remission because of my blood work. So I start second guessing whether I have RA or something else because of the daily pain and fatigue that continues despite the MTX. I tried adding Humira and that didn't do anything either. Plus I am a social drinker and my dr. is adament that I have not more than a drink a month and it doesn't work for me.
It gets better. So my liver enzymes are aways in the low normal range while I'm on the MTX and I am having drinks on the weekends. For at least 2 years I did this- first year was too scared. Now after following the same behavior but had been off the MTX my enzymes became elevated! Not super high but enough that the doctor called me and said stay off the MTX for 2 weeks and re test. I didn't tell him I'd been off all along because I thought I might have had a drink the night before the test. So I retested and my ALT went to normal and my AST remains elevated but came down 5 points.( no drinks period) He didn't call but I have an appt. in the next couple weeks.
How long does it take for MTX to get out of your body? I'm surprised I have not flared. When I was on MTX the first year I had to be off for 1 month and flared. I am still just hving good days and bad days. Maybe I am a little more stiff or a little more painful but not enough to want to take MTX for it.
I saw my last living uncle (83) recently (at a funeral) and he clued me in that he has RA, another uncle had it and my grandmother. No one told me this before. My mom (in law) still says it's untrue. He showed me his crooked hands however and says his feet are that way too. he says he has NEVER taken meds and neither did my other relatives. Now I don't want the crooked hands but maybe plaquenil would be enough. Maybe my RA is not too severe even though it started out as the worst case my RD has ever seen.
I don't know where I was going with this....but at least it's off my chest.
Thanks for listening.