Steroid reduction plan.

dreamdaisy

You are so right, annie_mial (it's lovely to hear from you, BTW, thank you for chipping in), we can only take these things day by day. I think you are doing well, by the sound of it, and I sincerely hope that it carries on smoothly for you and that you can reach your goal. 2.5 sounds PDG to me (pretty damn good) and if you can stabilise on that for a while, well, wouldn't that be fantastic? My fingers are corssed.

I hope, as I said, that by giving myself a good long spell on each rung of the ladder (so to speak) that I will be able to succeed, but if I can't it won't be disaster. I have no idea what tomorrow or next wek or next month holds - if I have to increase again then I shall, but I will try to avoid hitting the 20 level again (I have never been higher than that, and for that I am grateful). I have stuck a note up on the wall in my office - 'Slow and steady stands a good chance of winning the race' - that seems to sum it all up!

Perhaps we should name ourselves the PREDS club - Planned Reduction (Eventually) of the Damned Steroids. Club logo?



That fits, methinks. DD

Colin1

Hi DD
I have been on the Pred for 6 years 20mg a day
tried to come off them several times and rheumy put them back to 20mg. Last year i insisted i had to come off the little buggers as my bones wher starting to get small fracyures and i was gaining weight, to say nothing about the big moon face.
Bearing in mind i had been here several times i really wanted this to work. I dropped to 15mg at once, then every month drop 1mg untill i was on 10mg. then drop 1mg every eight weeks. Problem is every time i drop now i'm bad with the pain so i do alternate days. I take 8 one day 7 the next. I am now on a constant 7mg and have been for about 7 weeks although its only 1mg you can really feel the effect of the drop.
Colin

dreamdaisy

We are all so different, aren't we? Yes, I have gained weight, no, I don't have the moon face (at least I don't think I do!) but I have only ever been on a dose of 20 for only a few days at a time - a maximum of five days, I think, then I reduce again. Where I have gone wrong before is dropping by 2.5, just for convenience's sake. Not this time. I am still mentally drawing a line at alternating daily doses (again for matters of my convenience, **** this inconvenient illness!) but when I reach that point, well if that is what I have to do, then that is what I have to do. I am worried about the bruising and the long-term effect on my bones, that is what has triggered this optimistic bout of deliberate self-harm. We'll see, eh? I think you have done well, Colin, keep up the good work! Us PREDs are a doughty bunch, yes? DD

chris7

Hi DD

Only just catching up on all this properly and hope it does go well for you and the other PREDS here. Don't blame you for wanting to have some control over all these meds they chuck at you. Hope today is a okish one for you. Keep pedalling if you can.
Chris

salamander

Hi DD, you misunderstand me, you don't inject, you dissolve the pred in water and draw up 5mg/10mg in the syringe to the amount you want and take it orally. I was on omeprazole and still got seriously bad indigestion from 1mg tabs which is why my gp suggested this method. It works very well.

dreamdaisy wrote:

I know it could be done quicker, but I want this to work. My thinking is that a 20 day steady maintenance dose time will hopefully prod my body back into making its own (it hasn't done so for years now) thus helping me to successfully kick the pred habit. I am aware that the 1mg are not coated, and may cause problems, but I am on omep, it's a big 'may' and I always blissfully assume that side effects won't happen - and they don't, usually. As for injections, thank you for the thought but I am already doing meth and humira: no more thank you.

I have tried reducing faster and got nowhere, just slammed into the 5mg wall and gone rocketing back up. Utterly, utterly pointless. I am naturally impatient: I would quite happily stop taking them completely as from today and ****** to the ensuing mess, but I won't. Slow and gentle (everything I am not) is the plan. Watch me fail! DD

dreamdaisy

I am sorry salamander, I just saw the word 'syringe' and obviously leapt to a false conclusion - 'soluble' and 'draw up' didn't help either! I remember mixing the enbrel etc, I did not realise what you were trying to tell me. I reduced yesterday (the impatience won out!) and so far, so good. I just have the one 1mg tablet, taken with food and, as yet, no indigestion to report. As I said, I will carry on blithely assuming nothing will happen, it's one of my favourite strategies! Once again, I apologise. DD

tillytop

Hello all

Can I join the club too please? I'm just about to try to start a concentrated steroid reduction plan (been on them for years but for last 8 months have been on between 10 and 30mg daily). Down to 15 mg now and about to start reducing again. I tend to reduce gradually over the course of a week so, if I was reducing by 2.5 mg for example, I would reduce by half or one mg throughout the week. That's how I got from 25 to 15 and it seemed to be less of a shock to the system that way. Oh what jolly fun this is (not) but it's nice to have company on the road.

Tilly xxx

annie_mial

Just a little warning - forewarned is forearmed, as they say.

I have learned this afternoon that those of us with PMR/GCA (at least - there may be other conditions coming under the same umbrella) will not be prescribed the enteric coated tabs in the future. I gather there is more to this decision than the cost - there is evidence of poor system take-up of the coated tabs and it appears that PMR responds better to the uncoated ones.

On a personal basis, this isn't a problem for me - I'm already on Lansoprazole, but for any of you having to switch to the uncoated ones, I'd suggest you ask for a stomach protector at the same time. As Sal has discovered, Pred can play havoc with your stomach whatever the medics tell you.

Tilly, those of us who have been here before have a slogan- the lower you go, the slower you go. Yes, it's a pain-in-the-neck and a frustrating nuisance, but it is better than slamming into the brick wall of withdrawal symptoms/flare-ups. If you want some help, I can recommend a no-nonsense website with lots of info on Pred reduction..........it is for my condition, but the reduction info covers anyone who takes steroids.

Annie

salamander

Hi Annie, can you pm me with the link to that site too please? Thanks. Perhaps the soluble pred might work well for you as well. The take up must be the same as non-enteric coated. As I said, even with stomach protectors I got the most appalling indigestion, esp at night.

Sal

annie_mial

Hi Sal, I have PM'd you with the information.

The uncoated tabs are no problem to me, never had any trouble so far, but then I've only taken those as 1mg tabs as they are not coated anyway.

If I run into probs with the higher doses, I'll ask for the soluble version, so thanks.

Annie

Wonkylegs

Right ..... thanks to Chris7 I have found this thread .... looked and looked but ended up starting another one

How is everyone getting on with the steroid reducing ?

I'm joining the band of merry pred-reducers ........ by the heady amount of 1mg per month!

Starting tomorrow & keeping everything crossed that the itch doesn't come back, the joints behave and the infliximab doesn't fight back!

WOnky

dreamdaisy

I reduced to 13.5 from 15 on 19/01/11, and will drop to either 13 or 12.5 on 9/2/11. The impatient DD says go to 10, sensible DD says drop to 12.5 and the new, improved ultra-relaxed DD says 13 ('cos there's no rush). I'll see which version of me is in residence next Wednesday (and no, impatient DD will not be allowed to play, she is a bad girl.)

ratface

Hi One and All,

Hope you don't mind me joining you here on this thread.

I was finally steroid free last year.I was prescribed 15 (mg?) a day (for PMR) back in 2007/2008.

My first reductions were by 2.5 a month until I was down to 10. Then I reduced by 1 a month.

On days where the pain was worse I allowed myself an extra 1 for that day only.

I was working full time and driving to work (about 45 minutes each way) so felt I owed it to myself to feel as comfortable as I could.

The final reductions from 3 were definitely the worst but not impossible.

It took me about 4-6 months to finally stop taking them.

I did read on some site or another that someone cut their prednisolone in half to get to the end - it was this statement which gave me the incentive for the final push. (Think I got jealous that someone had managed to come off of them!)

Then of course there is the added bonus ...... I have lost all of the extra weight that I had put on while I was taking prednisolone. (At least 2 stone which had crept on gradually).

Hope this helps someone.

PS Dreamdaisy hope your reduction goes well for you tomorrow

Love to all xxxx

dreamdaisy

Hello ratface, thank you for that encouraging contribution - I have jumped the gun, reduced one day early and by a WHOLE milligram! I read an article in today's Daily Mail (it's health day, often good for a read) and there is a page by a woman from Channel 4 (I think) who has also battled with the steroids - I've got the roll round my midriff, and the hump at the base of my neck and probably the fat face too, I just cannot tell any more (probably 'cos I cannot see it thro my piggy little eyes). 'Demoralised' hints at the current state of DD's mind. Never mind, eh? I found my little cyclist:



I am cleverer, however, 'cos I juggle the meds at the same time.

julie47

Hi DD
Just popping in to see how tthe reduction is going (I got a sstutter I see)
Well done for reducing one milligram, that is great.
Just sending heaps of encouragement to you
take care
thinking of my lovely ffriend
Juliepf x

dreamdaisy

Oh julie47pf, thank you. Encouragement is much needed and much appreciated. DD

tjt6768

Hi hun, I hope you can continue with the reduction without too much ill effect, I know it's not an easy thing for you to do but I am sure that you know that we are all here to support you....

dreamdaisy

Thank you Tony, I haven't even hit the hard bit yet! That'll arrive as soon as I try to get below 5 (that expectation is based on passed experience.) Gawd knows what I'll be like when I do - I think overall glumness is the main culprit at the moment but hey-ho, it will pass, all things do. I now have three weeks at 12.5, so that's fine, that's plenty for a 'comfortable' life. Yeah, right. :sad: DD

ratface

Hi DD,

Hope you are doing OK today.

My GP told me when I was reducing prednisolone that they also contain something which 'lifts your spirits' ? That's why they tell you not to take it before bedtime (or so he said). I didn't know this but it does explain why my moods were up and down when I was reducing them. (That's my excuse anyway).

Good luck

Rat Face

dreamdaisy

I learned from scattered ( a wise forum member) that they should always be taken first thing, as this mimics the time when the body naturally produces its own corticosteroids. I have never taken them at night, simply because they do pep one up - why be pepped when one is supposed to be asleep? A waste of pepping, methinks. I am off to plug myself into the mains, see if that gives me some zip! DD



Nearly worked!

tillytop

Well done with your reduction DD!

Re taking the pills in the morning, I only became aware of that recently, from the forum, and I have always taken them in the evening. When I tried to swap to the morning I just found that I was "wasting" the day waiting for the pills to kick in - whereas if I take them in the evening, I am at least more comfortable during the night and manage during the day until they wear off (which admittedly seems to be getting earlier). I'm now down to 12.5 and it is just not enough but trying very hard not to give in and increase the dose again. I guess that, in theory, if you are taking enough of the stuff, you shouldn't have that problem but since most of us steroid-poppers seem to be in a constant state of trying to cut down, I reckon we'll never know!

I too read the article in the paper DD - my friend passed it on to me - and I thought it made interesting reading.

Tilly xxx