in pain

Had phone call from rhuemmy nurse today after last weeks appt. The outcome is that because my bloods are ok they don't want me to restart humira. I wish I had never agreed to stop. Just because my bloods are ok doesn't mean I am. I am in more pain now and am getting agro because of time off sick. All they said was to go and see gp appt on friday to increase amytryptylline and see Occy health about early retirement

9 Replies

  • Kath, they don't take into account that some of us has to work to support our families do they. I've been of mtx now for about 3mths give or take and i am in a lot of pain,i can't go back onto it or if until my operation next month. I have just taken 2 more tramadol as i'm in pain and i am now downstairs as i can't get comfy with my knee,so i know how your feeling.

    Take care, sylvi.xx

  • That's a bit daft! Can't say you're fine on one hand and then talk about early retirement on the other - it doesn't add up! I hope you can hang on till Friday and then really push for better treatment. I hate being left not clear about what's going on with my RA & treatment, so much sympathy. Polly

  • I'm sorry to hear you are in pain. Having aggro from your employer doesn't help either. I do think if these employers had to have just one day of the pain we have to endure they'd feel a lot differently and be more understanding. Hope things work out for you.


  • That sounds insane! Something's missing in that picture! Just because your bloods are fine, doesn't mean you are somehow cured, and then to suggest you take steps to retire...

    Is this from your Rheumy or the GP? Can't beleive a Rheumatologist would suggest such a thing. I am so sorry, wish I could offer better advise, but I just get so angry at the way some of you here are being treated! Could you possibly see someone else that can manage RA? Loretxx

  • loret it was the rhuemmy nurse. This one I had never seen before but she didn't even examine my fingers or feet or anything just told me to talk to gp and see occy health re early retirement. have left message on answerphone as I was in bed due to nights when she rung me but its anyones guess when i will get a reply

  • Kath

    Why did you stop Humira...? I have been on it since Dec.2011 and steadily got worse till I had a real bad patch around March...I went to GP and he started Tramadol along with CoCodamol 30/500 which were now innefective. At that point he told me all my bloods were normal. I couldn't believe how I could feel so bad and not show on inflammatory markers...briefly I started to think it was all in my head...I was my consultant the following week and he told me to continue Humira...I think it has eventually kicked in as I feel well now, not just better but actually well...

  • It was a locum consultant who stopped it. I wish I had never agreed to it. After a few discussions with rhuemmy nurse they have now decided to do a scan of my hands to sort out my medication so here's hoping.

  • Thank goodness for that! Make sure you speak up for yourself - and your pain- so don't get fobbed off with an aspirin. Surely even locum consultants know that blood level soetimes don"t give a true picture of how active your RA is? Good luck Polly

  • My experience with peripheral neuropathy is that the drs really don't know how to treat the severe pain that goes with it. I have been on pretty much of a steady does of morphine and elavil for over 3 years. I still have chronic pain so I wonder how much it its helping until I have tapered off it and then am unable to function at all ! Gabapentin and Lyrica did not help, but the stigma and tolerance issue, as well as the side effects from the opioids, are discouraging at best. Any advice, experience is welcome.

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