Flaring again, forgot how bad it gets, it's been such a long time

Well had my last major RA flare back in 2006 I remember it took months and months to get me right had knees injected, prednisolone, mtx and was introduced to anti tnf injections (embrel) finally got my life back and have been ok for the last 5 years give or take the odd joint flaring, but started having trouble with my right knee June/July this year just started mild really would give way when walking along (i looked like I was part of the ministry for unusual walks!!!). Gradually knee started getting worse and really inflamed so thought right I need to take action as going to Spain in the August and didn't want to ruin the holiday, off I went to Rheumatology and consultant gave me an injection into the knee joint worked fine for about 2 weeks but by the time hols came I was back to square one and have progrssively gone down hill since, now have it in my ankles, feet, right shoulder, elbow and hands, neck, hips you get the gist. Back to consultant I asked for a course of steriods to get me going again but no she wasn't going to do that instead have been put back on sulfasalazine as not had them for a long time was told to increase dose gradually (apparently they can upset the system but never had any effect on me last time) so I've thought sod it I'll go straight onto 4 tablets a day am not prepared to get any worse, consultant also gave me a depo steriod injection which didn't work in 2006 and still hasn't worked in 2012 (big waste of time), that was 2 weeks ago and I had been continuing to go to work as an estate agent but have got so bad now can't grip anything or walk in the morning I finally gave in this morning and rang in sick, I think work have been expecting it at some point. I really had forgotten how bad things get when having a major flare but am also really angry as I felt this happening back in July and feel it should have been nipped in the bud then does anyone agree with me or also had an ongoing battle with the rheumatologists. RA isn't my only illness I also have Menieres disease and suffer with bad bouts of vertigo and sickness and have already had a lot of time off work at the beginning of the year with that, thankfully the Menieres seems to be a bay at the moment or god knows what mess I'd be in. Sorry for wingeing everyone but I just feel so crap at the moment.

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  • Lisa,i feel for you i really do as i am in pain,but my rheumy seems to think my pain is fibro,i have trouble seeing which is which as i ache a lot. Don't be sorry for as you say whingeing we all do it my friend. Crap is the best word for how we feel another word i use is rubbish.

    I hope you soon get it settled down and though you have had to go sick lets hope you soon feel on the up again.

    Sending you gentle hugs. Sylvi.xxx

  • Thanks Sylvi, hope you start feeling well again too, it's just soooo frustrating as I've been well for a long time, I read Shell1967's blog earlier 'A positive story' and that lady described exactly how I felt as when your meds do work and work well you do feel dare I say it 'cured', just goes to show though it's always silently lurking in the background waiting to pounce and catch you off guard lol if you didn't lol you'd cry and I do normally try and remain positive and hide the pain I'm feeling xxx

  • not a truer word spoken waiting in the background then wam starts again.

  • Oh how awful for you....especially after 5 years or so to have it creep up and bite you again is just evil. How I hate this disease! And such a shame that rheumy is being slow to respond, although I guess also hoped that it wouldn't spark off so badly. I wonder why he/she was against giving you a short course of steroids? I find that I do have to be quite forceful at times to make it clear how much things are hurting or interfering in my life as mine often wants to aim for the smallest possible dose or treatment. Which I sort of understand, and it's good not to prescribe more than we need. but sometimes they do just need to believe us when we say it's awful. Good luck. polly

  • HI Lisa, that's horrible and really my dread as I'm so well just now with the combination of MTX and Hydroxichloraquine. Mind you if I get five years of this pain free stuff I'll be grateful really because there are so many on here who seem to get no time off pain at all. Perhaps it would help if you could try and see it that way too although I know that when we are in the midst of flares it's terribly difficult to be philosophical - and maybe it's worse to have had a taste of remission and then for RA to catch up again. It must be especially hard having two diseases to battle with. Good luck with the Sulfa - really hope it works wonders for you very soon but if not perhaps you should go to your GP and ask for oral steroids to get this flare up under control for now? Tilda

  • Hi

    If you've not flared for a while one tends to forget how horrible it can be. Once in flare we remember quite quickly!

    Most I've managed is 9wks without any pain, but now the winters here I think I won't have pain free time again until the warm weather returns.

    Hopefully the meds will kick in soon and return you to a pain free state. So I am sending gentle cyber hugs.

    Take care & wrap up warm Joanne x

  • I do hope you can stop the flare with meds and rest. Loads of sympathy from here. My disease has been reasonably well controlled but now my consultant wants me to be off my meds in January. It's not easy to live with this hanging over us is it. And to impress on our nearest and dearest that we want to do things NOW because in a few months time we may not be up to it. Just have to keep thinking that we've been down before and come back up again... And make the best of the moment

  • The trouble with the beginning of a flare is that you (and everybody else) don't know whether it's going to be a little wobble or a biggy.

    Sometimes we get these little flares - just a bit of extra pain and swelling here or there which then goes down again. Unfortunately, the only way of telling the difference is to wait and see.

    Other times (the worse times) are when it really has a BIG go. I'm so sorry that this turned out to be a BIG one - but hang on in there, you know from previous experience it will improve.

  • yep sounds like me

    ok and fixed in 2005 now shit has let lose

    and i blame it all on the way we walk you try to walk properly and think you are doing it good but then your body is saying no no keep of that it hurts.

    and the whole thing starts off again

    hope you get on the mend soon but from what ive learned it takes a bit of doing

  • sulfasalazine i was on this and all me hands peeled i have photos i took to show them

    prednisolone i have been on this for quirte a bit and all me ligament feel a bit naff in me ankles

    when u wlk bad like i do on the left leg you start to compensat so that may be a problem with your knee still mine clunks like mad under the knee cap

    regards john

    ive been free of this for 3 years now all is back in 10 weeks

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