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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Hello all. I think I'm pretty much in remission with the Humira at the moment. I've only had one flare, small and provoked by ?reducing MTX and/or ?eating very badly for a week.
The main thing I notice is that while I don't have my hands, knees, wrists and ankles going up and down like balloons of hurt anymore, I do have continual pain in two large joints, my right shoulder and hip. It's not flaring up and down pain, it's a constant awareness of them at best and by the end of the day they are sore enough to need painkillers. These joints carry most of the load of childcare and housework.
Do you think this is joint damage from the untreated times making itself known? Strangely enough, when things were very bad ie 21/28 joints affected, these two joints were noticeable but didn't seem as painful then. Oh, maybe I was just doused in painkillers then, maybe that's why.
Anyway, I've never had these joints x-rayed. Is it worth it do you think? Who do I ask if I decide to? GP or rheumatologist?
Thanks for any advice or insight. xfx
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Rank: Advanced Member  Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
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Hi Merryberry ( sorry I'm hopeless and can't remember your real name, and love Merryberry anyway)
I was so excited to hear you are doing so well on Humira - I start next week and eagerly soak up good news stories!
Funnily enough I have a similar pattern without the Humira. When all my joints are inflammed and at their worst I am not too aware of my Left shoulder and hips, but when they are calmer the others kick in and make walking, stairs and driving difficult. I've put it down to the fact that when I am in a bad flare I can barely move, so do not use the large joints so much, but when I am a bit better I try and do normal things, only to find I can't because of the big joints. You are right that is also when I try and cut down on painkillers.
So my completely unscientific female logic makes me think they are bubbling away underneath the acute flares, but only come into their own when I really try and use them.
Not really much help to you, and certainly a topic for discussion when you next see someone. I hope you continue to do ok and wouldn't itbe great if the hip and shoulder pain got better too?!
love from
Alison
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 62
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Hi
I'm having problems at the moment with painful hips and knees and the outside of my thighs are very tender. There is nothing that can be seen. I had an MRI scan a year or so ago which showed I have bursitis and tendonitis in my hips so this is the pain I'm getting. I saw my rheumy this week and he said it's all inflammation in my body so it's obviously not only the joints that get affected. Perhaps you have a similar problem. I take hydroxychloroquine for the RA but this doesn't help with the bursitis. I was offered a steroid jab which I refused but if necessary I will increase my oral steroids for a few days and see if this helps.
There's always something isn't there!
Brenda
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Rank: Advanced Member Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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I know! Always something. DOn't think it's inflammation, I usually have none with the Humiraand very low CRP ESR nowadays. I like the idea it aches more because I can use it more now, of course that makes such sense.
Still I think I want to get them looked at, by imaging (hopefully not MRI, i wimped that out last time). It's a bit tiring. And OH! I forgot to say, I've applied for a job!! so i'm trying to get a good stable pic of myself, far as possible.
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Merryberry
I also have pain in my feet and hips and pelvic area, but have no inflammation. I don't really know why, I've been seeing the physio for months now, but even though I try and do the exercises it doesn't make any difference. I feel this is something I have to live with, unless it gets unbearable of course.
You perhaps notice these joints now if they're the only ones hurting. It would be worth asking about having an x-ray, then you would find out if there are any problems in these areas.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Merryberry - Sorry to hear this when it's been going so well with the Humira. I think that you would need to see the rheumy to get the x-ray. They usually try that before any other scans. Hope you hear soon from the job application. Take care.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
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Good luck with the job! I can see why you want to get everything sorted and on top of it all  all best Alison
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Rank: Advanced Member Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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yes it's all entirely bearable i find, because it's so predictable, compared to RA flares. it's just there, and rest makes it a lot better and doing stuff makes me need painkillers. end of story. much simpler than the flaring stuff, heh everyone? I think I will ask for xrays via GP, see if anything big shows up, then just get on with things. but always mention it to rheums in passing :)
thank you all very much
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi,
Just read this!
I would have the x rays done just so you know about any joint erosion as with rheumatoid that can be a possibilty.
It may well end up where the worst joint(s) will keep playing up now and again. I have this with my knees, they were always the first joints to flare and also the worst affected.
So glad that H is working for you and well done in applying for jobs!
Also, you could try an arnica oil/gel?
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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ooh, could I? there's a shop round the corner sells that kind of thing? might help especially with the shoulder, where the joint hurts a fair bit but by the end of the day half the painc omes from muscle ache around the joint.
now let me find that a s.ot on the list ... oh yes at about item 26. bet you know that feeling Amanda! so many endless mundaenly critical wee bits and bobs, everyday. have also got my 4th week running of marc away for much of the week, am so thankful he was around more last year when treatment less successful.
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