So I had my 6 month check up with the rheumy today. She's totally lost knowing what to do with me - I've had to come off plaquenil again as it's just making me so sick and such bad stomach acid I just can't cope with it. All of the other treatments we've tried I seem to react to - which we now know is probably due to my severe photosensitivity which some make worse - and other treatments such as nsaids I can't take at all.
Over the 5 years since I was diagnosed my bloods haven't really changed - I come back with a "medium" ANA and all my other lupus bloods come back negative or borderline at worst. She's completely stumped as to why I'm getting so many joint problems and so much fatigue as it's not in line with how the results are reading.
She's not happy with how many steroid injections I have to have now - there's been 3 this year already - and doesn't want to start me on oral steroids as my weight has shot up by 14kg in 6 months (thyroid levels being reviewed in 2 weeks). So having discussed it further we have agreed for me to give methotrexate a try as it's also a good medication for the photosensitivity and everything seems to point to it being the best thing for me to try next. My chest x ray is all fine, in up to date on my flu jab etc so she's starting me immediately on 15mg once a week to see how I get on. She is insisting that I try the tablets first but is happy to jump me to the injections quite quickly if my stomach is really bad and has told me to take them once a week and then take the folic acid 24 hours later to counteract the effects.
I've decided to start these on Thursday evening as I have my cleaner in on a Friday who will help me out with things if I feel bad or react and then I also have the weekend to rest if i need to as I've read that it can cause tiredness. Hence the thread ... does anybody who already takes this have any handy tips that they can pass on to help when taking methotrexate? Such as take on a full stomach or even don't have too big a meal first that kind of thing? I know with other meds I've had experience from other people has been invaluable and any help here will be much appreciated.
On the bright side (!) it took so long for the x ray to come through that I was sat under the lights in the waiting room too long (lovely migraine starting now) and my hands started to hurt and swell up in reaction so I got the nurse to mention it to the consultant and got to go back in and show her what happens to my body so she could actually see what is happening rather than my descriptions not fitting what she is seeing either in person or on tests so I'm hoping that will help her getting to grips with it all.