Have come out of remission

For the past couple of months I have been suffering from exhaustion and so much pain everywhere. After I have been to work I have to go straight to bed for a few hours and on my 2 days off sleep about 14 hours each day and still be tired. My hands, fingers, elbows, shoulders and knees are in so much pain all during the day. From first thing in the morning until I go to bed and then it starts all over again. I am due to see my consultant in 2 weeks. I think some of my tablets have stopped working. I am on mtx sulfasalazine and hydroxychloroquine along with Codeine and folic acid every day except on injection days. Do you think it is worth ringing the rumey nurse or should I try to hang on for another 2 weeks? I have been using Voltarol but am not getting any relief and also hot baths and heat patches but nothing seems to be working with the pain. 

Sorry this is a long post. Any suggestions and I hope you are all keeping well. 

Carol. Xx😀

8 Replies

  • Hi I'd phone them as it sounds as if it's flared again and there's no  point been in constant pain, I'm on the same meds as you since 2014 and I'm still not controlled properly and waiting to go on biologics I don't know how your still managing to work I've been medically retired and am waiting to be sorted out with my pension but it's a big wait off my mind as I was stressing out about my work take care xxx

  • Hi.

    I too have been on same meds for nearly 2 years but didn't really make any difference to me and I was in a lot of pain and uncontrolled RA.In Nov 2015 I had 2 episodes of acute kidney failure and as a result was taken off sulfasalazine and mtx jabs.For 5 months I  had to wait until kidneys recovered and rheumy says we can't resume mtx or sulfasalazine and now I am on steroid tablets daily.These make me feel like superwoman but whilst the spirit is willing the body can't perform what I would like it to as they don't really do much for the pain.

    The steroids make me feel more perky and then a few days after that I am shattered and sleep all day,probably as I want to do so much when I feel up to it.

    By way of pain relief I use cocodamol during the day and at night I have liquid morphine.- sends me off the planet so that's why I only save it for nighttime.Having said that I only try to use it when I can't control my pain any other way as I don't want to rely on it and the effects have sometimes not worn off the next morning.

    Be a good idea to contact rheumy. and see what they suggest 2 weeks  is a long time if you are in pain.Even if it's a temporary measure until you see him in a couple of weeks it will hopefully provide some relief in the short term.

    I have been working full time up until Nov but am currently off sick.Fortunately I was able to do my job from home so tI didn't have to negotiate a trip,to an office each day..If that had been the case I would have had to give up working some time ago so I can understand how tired and worn out you must feel after work each day,and pain on top is no joke either.

    Hope you get the help you need from your Rheimy.



  • Thank you Crusee and pop smith. I work as a Breakfast chef and it is agony being at work! I was in remission and doing really well until this flare up or whatever it is happened. I will ring up and see what they say. 

    Take care. Xx

  • That must be hell for you such early mornings and stiffness at that time of day.It would take every bit of wherewithal that I could muster to attempt that at that time Of day.I take my hat off to you.



  • I'd contact your team, they may be able to bring your appointment forward or offer you a nurses appointment if they can't, two weeks mights as well be two years when you feel like you do. As you know flares can happen even when well controlled but they're damned hard work so if you do manage to see your nurse she may suggest a steroid injection or a course of oral steroids to get you over the worst, she may even suggest you see your GP for stronger pain relief until you see your Rheumy. Whatever you do don't worry, it's not your fault & you risk making things worse. Having been in med induced remission so recently it would be unusual if it's your meds not working but it is possible you need a dose adjustment on one or other of your DMARDs. You probably know that fatigue can be an indication that you have disease activity, the exhaustion is likely to be to the flare building up, no amount of sleep will ease it. Is there any way you could have a bit of time off, pushing through is not the best thing & doing so could be tricky even dangerous considering your job.

  • That's very sound advice NMH.

    As a breakfast chef Carolsos would be working with hot pans,oils and other hot equipment, could be VERY dangerous.


  • I'm on the same meds as you, and also generally in remission although I still have flares here and there.  But even the thought of getting up very,very early to cook food is enough - so heaven knows how you manage!  

    You don't mention having any good NSAIDs to hand?  I no longer need to take them daily, but have Arcoxia prescribed so that I can take a 5-7 day course at the first sniff of a flare.  And so far that has always been enough to settle things back down.  And then the meds carry on working as they did.   So you having a bad patch may not be a sign that the ends have stopped working, but just one of those things.  But like you it's a fear that's always at the back of my mind, as I know this can happen suddenly. 

    Anyway, like other I think you need to take action and contact your rheumy team. It's no fun feeling like this so I feel for you.  Hope you have a day off soon. 

  • Poor you. Yes I'd ring them. Hope you feel better soon.

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