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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, just a question or two regarding pred. I have been on it now since 5th Feb, when I was on 30mg for one week, then reducing down every 2 days to get to 5 mg within the next 2 weeks. Not managed this, as by 15mg the pain and swelling are back. Spoke to the nurses who said to stay on 15mg for now, until next month when i have my appt. My problem now is, what can I expect at the next appt? If I need to reduce, can I do it much more slowly? I really dont think I can do it at 5mg at a time, especially over two days. At the moment I can just manage to work, but its hard, so if I stop then I am back to the way it was before, constant pain, and struggling to cope. I know I am asking alot, but I really expected much more of the pred, i.e. to work without pain. I realise now that that was expecting far too much. Any ideas of what may happen at the appt? BARBARA
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Barbara You have done really well to have come down this far and by staying on 15mg for a time you will give the steroid a period of 'evening out' and the pain and swelling time to settle before going any lower. I imagine, from my own experiences of being on pred, that the reduction will need to go really slowly from here on in as clearly your body is not liking the adjustment. Possibly something like a reduction of 2.5mg every two weeks until you reach 10mg after a month, then even slower after that. Perhaps 1mg a time until you reach a point where you really cannot go down further without problems with inflammation. An alternative drug may need to be added to the mix. It took me ages (months!) to get down from 7.5mg to 5mg and what seemed like forever to get down to 3mg which is the maintenance dose I've been on since October 2007. Can't get it any lower and in fact have now had to add back in Naproxen which is a safer alternative to the prednisolone as it was the only way to control the inflammation. Ideally the rheumy wants me off the steroids completely, been on them for 20+ years, but without better control from elsewhere it's just not do-able! The only way to avoid flares, in my experience, is to take it very very slowly. Your body will soon tell you when it isn't getting enough steroid. All that said your rheumy may have other ideas as it has been a short term med so they may have a different way of reducing. I hope you have a successful appointment with a suitable plan for the coming weeks. Lyn x
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Joined: 1/29/2010 Posts: 264
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Barbara, thank you so much for posting this as I have a similar problem . Lyn thank you so much for the reply, and explaining what reducing gradually really means, I've never asked at appointments, just assumed that slowly meant a week rather than several weeks, how silly of me, I shall now try this. So many many thanks both of you. Best wishes Sheila
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Joined: 12/3/2009 Posts: 1,740
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Hello Barbs aww no yes seems far to quick,id explain how you feel and see what they suggest. ive not been on the tablet form by my aunt did she reduced at 1 or 2mg at time. and slowly. glad nurse told you stay on higher dose,sorry see your suffering so much. sending you a hug melly cuddly cats make my world seem so much more fun
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Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Lyn, Sheila and melly, Thanks for your replies, Lyn, so glad someone else has done the same thing, I did think it was very fast reduction, but assumed as it was meant to be a very short course until I could get down to 5mg that it would be ok. You have explained it really well, so I can explain to them at the clinic and hope they listen, and then I can do it more slowly. Thank you melly, always so supportive!!! Sheila, glad this helps you too, take care x BARBARA
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Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Barbara
I also have been on pred a long time, and have managed to get down from 5mg to 4 mg, but it's taken ages with a few hiccups along the way. I'm now trying to get down to 3mg, so that will probably take me 6 months as well. I would think it would be very difficult for you to reduce you dose very quickly, and if it makes you feel worse, then stop and go back to your old dose for a while, and try again later
The docs make it sound so easy to to do, but as lots of now know, it's very difficult.
Lyn
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Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Barbara,
I just want to say I am thinking of you and hope you are okay.
Having never taken oral steroids I don't feel I can help much except that they need to be reduced extremely slowly....
Much love,
Amanda
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Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Barbara
Can't really help but wanted to send you a big hug
Love Jeanxxxxx
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Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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And one from me Barbara.
Love, Doreen xx
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Hi Barbara,
I have been up and down on steroids for such a long time and always reduce in the same way. From 15mg, I would have alternate days 15mg/12.5mg for one week. Then I would have a week at 12.5mg. Following week would be 12.5mg/10 mg alternative days with 10mg the whole of the nextweek. I always do this until I get to 7.5mg then come down 1mg at a time alternative weeks.
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Joined: 12/3/2009 Posts: 1,081
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Sorry can't help Barbara - I've only taken them short term - but hope you are managing and can find a way to reduce them that suits you.
Julie
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Joined: 12/3/2009 Posts: 1,110 Location: London
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Thanks everyone. I went for bloods today, and spoke to one of the nurses about it. He advised to stay on the 15mg for now, until my appt. At the moment I only have the 5mg ones, so cant go more slowly than down to 10mg anyway. Hopefullly they will understand why I couldnt get down to the 5mg. I think I was so hopeful as when I started on the 30mg it was amazingl, no pain or much swelling at all, felt wonderful!! so thought as I lowered the dose it would be the same. How dumb am I???!!! BARBARA
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Joined: 12/3/2009 Posts: 1,740
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Hi ya Barbs well done speaking to nurse good idea Dumb you no never. perhaps your gp can give you lower dose tablets that way can reduce down easier than 5 mg at time just a thought. take care hugs melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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BarbieGirl wrote:... I only have the 5mg ones, so cant go more slowly than down to 10mg anyway... Seems sensible to stay on the 15mg whilst things settle, but you should be able to cut the 5mg tablets into two thereby dropping by only 2.5mg!!  Once settled it might be worth trying Eleanor's suggestion, it's an effective way to reduce. Good luck, Lyn x
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