Advice?

Hi, I have had lupus for over 20 years and never really had bad joint problems until this year where I have had difficulty with my knees and generally stiffness in my legs and walking. I was holding out for methotrexate to work but now after being on it since April and on the max dose for the last 3 months I have lost hope. Feeling very down and not sure what if anything my consultant will do next???

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  • Oh dear, sounds like you are getting into that cycle of feeling down because you are in so much pain, then any positive attitude that is left to fight the pain and keep you going is depleated, then before you know it you are just exhausted and fed up and don't know what to do? That has been my experience anyway.

    Solutions that helped me were having my pain meds reviewed by the pain team. They aren't on top if it at the moment but things have improved since I've been given something for breakthrough pain. Also my pain team is very holistic and the physio has been brilliant. Have you ever seen a pain specialist because that could be an option? I have no experience of methotrexate (yet) so can't comment.

    In my experience being really frank with my rheumatologist about how I really wasn't coping with my pain triggered my referral to the pain team and a new lupus meds regime. It made a difference to me, on the other hand perhaps a change from methotrexate to a different drug would be more appropriate for you. It's so difficult because we're all different.

    BUT, you aren't alone. Please feel supported. Being in constant pain is no joke and this forum has so much support to offer. I hope you have as comfortable night as you can.

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