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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, well, only taking 5mg of pred every 3 days now, as instructed, and feel just awful!!! Forgotten how much pain I had before!! My back is agony, and strangely is giving me a stomach ache too!! Everything else is sooo painful, hands were not too bad, now really hurting. My next appt is July 16th, so nothing can be done until then. Sorry to complain, many others much worse than me I know. BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Barbara,
Sounds like you're in an awful state! Can you have a rest day today? If you can have a day of little activity to give your body some rest, hopefully the pain will be less tomorrow.
x x Joanna
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009 Posts: 103
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Hi Barbara,I've been off steroids for three weeks now and I've noticed aches and pains creeping back in.Have had a stiff neck and shoulders for several days and what I call a 'lumpy' throat when I swallow.Fingers have started to be very stiff first thing in the morning too.I was put on MTX a few weeks ago but had to come off them after two weeks due to a rash but have now been put back on them at a lower dose so hoping that will help with the stiffness.Like you,while on steroids you do forget just how bad the pain used to be.Unfortunately,the consultants don't like you to be on steroids for long even though they are such a great help.Take care, Brenda.x
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 89 Location: Braintree, Essex
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Hi Barbara
sounds like yr not having much fun at mo, I can relate I too feel like I need to let off steam about the pain but konwing that there are others worse, but im sure everyone understands and this is the place to do it.
Take care and rest as much as possible (not always easy I know) hope you have some relief soon
corinne xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Barbara
Sorry to hear you are suffering so at the mo, with all the pain.
I ve slowly reduced pred to 2.5mg per day and still wondering if the leflunomide is kicking in after taking it for four and half months, together with hydroxy and diclofenac. I am getting terrible painful shoulders and arms and now wearing my wrist splints all day, which is helping. By the evening I m not fit for anything and then it travels into my hips and glad to go to bed with my 30/500 co cod.
Like we know there are others far worse, but it doesn t make it any easier, pain just pulls you down so much. I m not due back at the hospital til Nov. and hope things settle down bit better. Sorry I can t give more constructive advice, really hope things improve for you very soon.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Barbara, So sorry to hear you are so low at the moment, can the doctor not give you a different painkiller maybe your body has just got used to the one you are on. I was on Meloxicam they were good but you need a stomach protector with them. Also I used Pernaton Gel on my hands, shoulders and neck when they were bad, It was really effective. Hope you get some relief soon. Thinking about you and sending a big hug to hopefully make you feel a little better. Lorna xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 aww barbs gentle hugs sweety sorry u in such pain ,id ask see rheumy nurse as in now u carnt go on such agony. yes stomach back are so closely linked sounds like tummy taking strain off back. you need take couple days off to get pain back under control rest is essential. text u later see how things are hugs. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Barbara
So sorry hear that you under the weather at the mo. Definately you need to have 24/36 hrs of complete rest and hopefully that will settle things for you.
Keep in touch and take care.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Barbara sorry your in pain from reducing the steroids , try and get different pain killers and plenty of bed rest ,i had been on steroids for 5 years and have been off them for 2 years and 2 months  ,consultant said i would never get off them but i was so determined as the side effects were horrible and in the end i was still in pain and joints were still swelling , it was bloody hard getting off them but its the best thing i did so try and stick with it , do it slowly try and trick your body , good luck . Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thanks for replies, I will call rheumy nurses and try to get seen. I saw the nurse on 20 May and told her I was having problems getting off the pred. I also said the tramadol dont really work, and she said no they wont do much, you need an anti inflamatory, but didnt prescribe any. I also asked for a referral to podiatrist and she said she would do it, still no letter so far. Makes you wonder if they listen at all!! Have had a day in the park with the little ones, its a bit of a walk, but once there they love it. I know I will pay for it later, its already giving me more back ache and hands and wrists hurting from lifting them etc. I know I need time off, but its so hard as Amelie's mum is a teacher, so cant ask for a couple of days holiday. Not had Sam at all this week, and had Tristan today, tomorrow should be easier, its only Amelie and I have my friend's daughter for about 2 hours while she takes her disabled daughter to hospital appt. I do appreciate all the replies, and the advice, I know I need to listen to my body more, and that I have to reduce the hours etc. If I continue to feel like this, I wont have any choice!! BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Could you have a depo injection? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Julie, have had the depo injections twice before and didnt do anything. So when consultant suggested it again and he asked me how it was, I told him, and he said not to bother then. It maybe that I cant rest after having them, although no one told me to, I only found out on here. As i work with toddlers I dont get a chance until the evening, so maybe its too late by then. BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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The depo injection doesn't work for me either , had only 3 in 15 years and only got a day of feeling all right , consultant said it doesn't work for everyone , i refuse it now as the only thing i get is a sore backside !
Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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aww hugs hun yes depo only works for me if i rest for 24 hours minunm afterwards. sounds like work related duties causing extra pain ahh yes if mum a teacher she cartn take od days off to cover your hols. not long till summer hols. maybe bed earlier,ohh barbs sounds so horrid all that pain. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Sorry to hear you are suffering Barbara. Have you had a blood test recently? When I was on sulpha it sent my ALT soaring and I completely lost my appetite, so I'm wondering if the sulpha could be affecting you ,but I did have other symptoms as well.
Love, Doreen xx
Sorry, just realised that the bit about loss of appetite is on your other post!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Aw poor love, pain is SOOOO horrible and especially tiresome when looking after littles all day long, it;s not as if you can just go and have a nap!
The jabs don't help nearly as greatly unless you have a proper rest with your feet up, ie in bed or on the sofa.
Anti-inflammatories are not good on the tummy in long term use and I never use them any more, but of course many people take them.
Much love,
Amanda
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