Reducing Pred.

I'm feeling really fed up and could do with hearing others' experiences, especially any positive ones or ideas that might work.

I've been on long-term Pred now for 5 months continuously (40mg/day). My consultant did try to reduce this to 20mg a couple of months in with disastrous consequences involving the little green men and a long stay in hospital and back to 40mg.

Just last week, they've tried again to reduce it and it's all gone wrong again. I've been put back to 40mg again and I'm just about hanging in there but with strict instructions to go to hospital if there's any further deterioration, and things aren't looking good with things very much on the edge of not good (I hate that, I'd much rather they were ok or not ok then I'd know exactly what to do, but don't worry, I won't take any chances).

Has anyone else had trouble coming off or at least reducing their Pred dosage? I really want to reduce it because I'm struggling with the side-effects. How have others managed to successfully reduce? I really don't want to be on Pred long-term, I'm on plenty of other stuff as it is.

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Hi

I am sorry to say i have no advice, but do know how you feel. I have been on pred continusly for 18 months with doses ranging from 60mg and at one point got down to 20mg. Everytime i go below 20mg it is a disaster! I am going in to RBH at the end of the month for steroid reduction.

I am sorry that i have no advice but if you need to chat feel free to PM me

Take Care

Sarah

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hi ratty I've been on pred for n12 months and various does but likewise once get below 20mg or 20 for any period time end up captured saw reg in clinic last tues and have been told to reduce by 2.5 evry 2 weeks till down to 10 then back to clinic ha drop to 20mg tomorrow but not sure how long will last.

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I have had a lot of problems reducing steroids. Whenever I reduced them too fast I ended up back on 40mg. I reduce by 1mg a week, but if I think I am not well enough to drop then I leave it a few more days. With common sense this has got me from 20 down to 13, and yes it has taken ages, but it is worth it. Maybe worth asking about an even slower reduction?

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Hi I'm having problems reducing the steriods dose also. My consultant did testing for neutrophillic asthma which came bAck positive. This asthma difficult to control as the neutrophil cause further inflamation in the lungs. This type doesn't respond to oral steriods or needs a very high dose with a little stabilty . No current treatment tho one group of antibiotics the mycin group is showing a reduction in inflamation of the lungs. You may want to ask you dr for this testing. I'm waiting to start antibiotics in feb. If improves then the pred to get reduced. Hopes this info helps. Takes a little time to get head around. Least it proves I was taking my medicine as fed up getting asked about compliance with my medicine

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Hi Ratty

Hope you're feeling a bit better. Steroids are a real pain with all their unwanted side effects, but I guess we kind of have no choice in taking them unfortunately!I've been on them for over 18 months now and am desperate to get off them too. My dose ranges from mostly 30-40mg I think I did get down to 20 mg but it didn't last! When I last saw my consultant she has decided to try reducing me by 1mg/week (as 5mg/week was too much)- I was doing really well and got down to 31mg, but then got ill before Christmas, so had to up to 40mg for a few weeks- have now started back down on 39mg, I too leave it a few more days/extra week if my peak flow's not great, or I'm needing more nebulisers before i then reduce again. Good luck with your treatment and hopefully your consultant can work out with you something specific that will work.

Best of luck Fi

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Hi

I am afraid I cant offer you good news. I am trying to reduce prednisoline as have been on it continuously for seven years and the dose always fluctuating. I am now in a position that i am reducing by 1mg a month. I would reduce by five mg a month before but i still ended up getting bad on it so we going ultra slow. I reckon if i do ok i think another four years or so and i should be off it!!!!

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well got down to 20mg for all of 5 days and saw prac nurse for something else yesterday am and told her reg had told me to try and get down to 10mg before go back in march and she laughed and said needed to ring resp nurses now cause was cough cough and had no chance of getting to 10. pred now back to 30 reg had told resp nurse to tell me to increase to 22.5 again but since was struggling on that have put back to 30 thyen will go to 25 in week then back to 22.5 and fingers crossed will avoid being captured again. not impressed.

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Hi all,

Thanks for your messages here and PMs. Sorry I didn't get back to you - after I posted, I got captured and I've just been let out. Given that I've now had the same reaction twice to the same attempt at dropping the dose, I think things might be taken a little slower - off to see the consultant next week to see what words of advice he has...