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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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The last 10 days have seen a flare-up as I try to reduce my prednisolone. I am stuck on 14 mg a day and the hands, hips, feet and knees are letting me know that they are not happy. Can't increase the steroids because I need to get off them to pass the Humira clinical guidelines, and increasing them only adds to the delay. So it's hefty doses of paracetamol, codeine and morphine for me....... Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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I'm off to have some acupuncture - that will help - and the sun is shining too, it's beautiful day here, if a little cold. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Sorry to hear (see) you are having such problems. Do hope the apist can help.
Have you had ap before? Take care
Anne
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Paul, sorry to hear you're in awful pain, hope the acupucture helps. i know you're really stuck at the moment trying to reduce the steroids, seems there's no way to go for you right now. it's been a very grey and wet day here, and one of the coldest all winter, we're off to see the show Wicked tonight, not absoutely sure it's my cup of tea but it has had rave reviews .. only thing is the running time is 2 hours 45 mins!! good job i know the seats i like with plenty of leg room, thinking about taking my PJ's and packed tea  will have to get up and move which is why i've chosen the seats i have. hope to hear you feel better, Suzanne
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Yes I have been having acupuncture for years. I find it really helps. My acupuncturist is also a physio so I got some soft tissue massage too. I feel much better. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 185 Location: Lowestoft, Suffolk
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Good to see you've managed to get a little relief. Can't imagine how you cope with such a long flare up while you try to sort out your medication. Hope you get where you need to go soon. Angie Be yourself - everyone else is taken. XX
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Rank: Advanced Member  Groups: Registered
Joined: 3/29/2013 Posts: 106 Location: Surrey
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Hi, Sorry to hear your having problems but glad the acupuncture is giving you a little relief  My consultant is going to be trying to take my steroids down in a few months and I'm a little worried about this but feel I have a good team looking after me so going with the flow. Louise.
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Thnaks all. Louise, you are guaranteed to have the same experience as me. What steroid dose are you on currently? Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 3/29/2013 Posts: 106 Location: Surrey
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I'm currently on 7.5mg so not quite as high as yours.....
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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Oh dear Paul, how horrible for you. It must be so frustrating especially as you are trying so hard to reduce your steroids. How many weeks after you reduce your steroids do you start to notice the painful changes? Hope the acupuncture works for you, it's good you have all these extra's that you've tried and found useful. Someone suggest acupuncture for me, I will probably go down that route if the neurosurgeon can't help me. Louise - I sincerely hope you don't have the same experience as Paul, it doesn't happen to everyone (Paul is just very unfortunate), I have been up and down on steroids like a fiddlers elbow and never had much of a problem. I think the academic view is that some peoples systems gets 'hooked' very quickly on steroids and other's don't, nothing really to do with the patient themselves, more a chemical issue. Good luck to both of you. Gogs 
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Rank: Advanced Member Groups: Registered
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Little Miss Sunshine73 wrote:I'm currently on 7.5mg so not quite as high as yours..... Gogs is right, you aren't necessarily going to have as bad a timne as me, especially as you are a lower dose to start with. I started at 40 mg and that's a lot to wean yourself off. The problem is that every 1 mg of reduction in dose becomes a progressively larger percentage reduction as you move doen. i.e. 1 mg from 40 = 2.5% whereas 1 mg from 10 = 10%. Your spread of percentage reductions won't be so large so you should find it a lot easier. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:Oh dear Paul, how horrible for you. It must be so frustrating especially as you are trying so hard to reduce your steroids. How many weeks after you reduce your steroids do you start to notice the painful changes? Gogs It' happens within a few days and no more than 7 Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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That's really bad luck for you Paul. The pain is miserable and really hampers your life.
No amount of 'gritting your teeth' can get you through that experience, when the pain hits hard you,
like all of us will look for relief.
I wish you all the luck there is Paul and hope that you can finally get to that point where they can offer you
this other treatment.
Best wishes
Gogs
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:That's really bad luck for you Paul. The pain is miserable and really hampers your life.
No amount of 'gritting your teeth' can get you through that experience, when the pain hits hard you,
like all of us will look for relief.
I wish you all the luck there is Paul and hope that you can finally get to that point where they can offer you
this other treatment.
Best wishes
Gogs Pain is a funny thing though. And my pain is probably a lot different to the rest of you because it is (with a couple of notable exceptions) not in the joints but in the ligaments and tendons. The pain there comes an electric shock. It varies in intensity and duration It's the persistent burning pain in my hips that seems to be the worst problem damn it. It makes doing anything that requires bending or squatting very uncomfortable. But I should not complain. I think I am better off than many of you. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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understand Paul,
pain is pain, however it introduce's itself.
i've had a busy couple of days doing extra in the house, if i an going to get pain it's in my shoulders which is what alerted me to my RA, and now my shoulders are aching. funnily enough although i get awful pain in my knee's because i am careful in just how far i can walk they don't bother me so much, and i get no pain from them sitting or lying down.
Would Humira work in the same way with tendon and ligament pain?
Suzanne
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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suzanne_p wrote:Would Humira work in the same way with tendon and ligament pain?
Suzanne Apparently, yes, Although I have to wean off the steroids so they can get an MRI of my lower back showing inflammation Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Paul I think you have as much 'right' as anyone. Never compare your pain with anothers. That's your pain, the same pain that stops you in your tracks from living the life you would chose for yourself. You always come over so robust and I'm sure that in real life it must get you down some days. You have all my praise for the way you handle yourself. I sincerely hope that this time you can get the steroids down sufficiently to have your MRI. I'm rooting for you Gogs
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:That's your pain, the same pain that stops you in your tracks from living the life you would chose for yourself.
Gogs Thanks Gogs. The strange thing about this condition is that whilst it affects your entire lifestlye it's mostly the little things that frustrate you the most. Take this morning - simple job - fit Venetian blind in one of the rooms. Easy peasy. Would have taken me about 10 minutes back in the day. Today? I am brought to halt by the discovery that 2 of the 3 fixings are going into masonry and need the hammer drill. I daren't use it. I will have to wait for my brother-in-law to arrive and do it for me. Grrrrr Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 3/29/2013 Posts: 106 Location: Surrey
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Hi, I really hope your get the pain under control, Paul. I see what you mean with the reduction does of steriods. Hopefully they won't try to reduce mine too quickly  Louise.
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Little Miss Sunshine73 wrote:Hi, I really hope your get the pain under control, Paul. I see what you mean with the reduction does of steriods. Hopefully they won't try to reduce mine too quickly Louise. What dose are you on (have I already asked you this)? Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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