I've got Lupus SLE and have been on low dose of steroids for 3 years...or maybe 4...I can't remember. (Isn't Lupus great like that?) However, my rheumatologist wants me off them and on methotrexate. I took the full dose, as recommended, on week one and felt awful beyond awful for several days. It was like being poisoned.
I spoke to my GP, who suggested cutting the dose by half, but I chickened out of that and cut it to 1/4 dose. Much better, but still feel awful abut 24 hours afterwards. Not as awful as before, but still not good. GP said I should keep at this dose (I confessed about the lower dose) until I can tolerate it and then gradually increase. However, it's been 3 weeks now and I don't feel at all tolerable!
I'm meant to have blood tests every two weeks and I forgot this week, as it's half-term. Was speaking to a GP friend today, who has just put the fear of god into me, re. forgetting the blood test. So obviously I need to get that done tomorrow and to stop worrying about what the methotrexate might have done tome in the meantime. (Not easy - she was quite menacig and the word, 'leukaemia' is enough to scare anyone, right?)
I just wondered if anyone else has had a bad time on methotrexate, what happened, what your side-effects were and whether you eventually tolerated it or had to give up? Frankly, I'd be happy never to take it again, but I wanted to give it a good go. Apparently what they offer me next is likely to be even worse. Such fun!
Anyway, if you're still reading this, here are my side effects: about 24 hours after taking it I suddenly become very tired - have to lie down RIGHT NOW tired. I feel nauseous and dizzy. I have a feeling of pressure behind my ears (like when you rapidly gain or lose altitude), my tongue hurts, my throat feels sore and my mouth kind of 'buzzes'. Eating makes my mouth feel worse. My tongue feels swollen and I feel uncomfortable talking but when I check in the mirror, my tongue looks the same as ever (so it's not actually swollen). My feet ache, my ankles ache, the backs of my legs ache and my knees ache. On one table a week this lasts one evening and the sore mouth lasts the following day. One four tablets a week it all lasted 3-4 days and was much worse.
Anone I know on it raves about it, so please do speak up if you weren't so keen. I'm feeling a bit of a freak, right now!