Messing around with medication doses when stable-ish

Starburst
Starburst Member Posts: 2,546
edited 12. Mar 2013, 17:10 in Living with Arthritis archive
Hello all,

I was just wondering if this is something other people have experienced.

I've been on the DMARD combo of Lef 10mg and MTX 20mg for 6 months now. I'm not in clinical remission nor are things all sunshine and roses but this is the best I've been since diagnosis in 2009. I saw my rheumy in December who suggested dropping the MTX dose. I felt it was early days, so said no. I saw rheumy nurse yesterday who was quite insistent it would be a good idea. I said no again as I do not want to rock the boat so close to the end of uni. I know they all want me to be stable of the lowest dose of these rather toxic meds but I'm unwilling to try as I am not "good" in terms of my RA but rather "ok and coping".

Am I being silly or sensible? I have very few side effects from the medications (mild nausea and minor hair loss) and to be honest, they're something I can cope with.

Thank you for reading. Hope it wasn't too rambly!

Sophie x

Comments

  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hm, brief answer - I dunno :) I do get where you're coming from and who wouldn't want some stability with exams coming up? Did you explain this and suggest reducing after the exams?

    I do meth and hydroxy, not meth and lef. I've been as high as 22.5mgs but have now been on 15mgs for ages. They're happy for me to stick there as 'It's a pretty safe dose'. Maybe it's a kind of benchmark which they like to get patients to if possible.

    I seem to remember you had to have a course of steroids for a flare fairly recently. That would suggest to me that you're not all that stable yet and, in your situation, I'm sure I'd feel as you do. However, they're the docs and I just wonder if there might be some other reason for wanting to get you lower. Are your blood tests OK on all fronts? I know you've just had eye problems - might that be connected?

    I guess the nurse is likely to repeat the doc's wishes but you might ask for some reasons.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hello Sophie
    I am sorry I cant offer any help, I do hope someones come along very soon in the same position.
    Not long now at uni, and I just want to say good luck with your results, you have been so determined to get through this course , so its all down to you...I cant wait to hear how you have done xx
    Love
    Barbara
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you for the speedy replies.

    My bloods are all fine, have had them reduced to 6 weekly. The nurse did say it was ok to wait another couple of months but that I needed to have a good think about it. I have been pondering on it since yesterday, so thought I'd see what others had experienced.

    I think I'll see how the next couple of months go and reassess when I see rheum in May.

    x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think you're 'stable' because the meds are doing their thing. You have a stressful time up ahead at university so this is definitely NOT the time to start rocking your meds boat. I can understand the temptation to reduce things if all is going well (I even hope to experience it for myself one day) but the beast is only subdued, not dormant. Come the summer, if all is still going well then that may be the time to start fiddling with dosages but not now - there is too much at stake. DD

    PS How are your eyes?
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    DD you just said exactly what I think but far more eloquently. I don't want to tempt fate but the eyes seem to be responding. I'll know next Thursday when/if the lesions clear up. Thank you for asking.