Steroid reduction plan.

dreamdaisy

Morning all, I hope today finds you all as well as you can be, given our ghastly circumstances. As some of you may remember, I made a stupid and foolhardy New Year's resolution to wean myself off Prednisalone, the one drug that really helps me and makes a positive difference to my life. This is, I admit, entirely in the spirit of extreme bloody-mindedness and a sheer dermination to make a grim situation far, far worse. I think I have hit upon a plan, and I would appreciate any feedback you think you can offer.

I was put onto these lovely little darlings in February 2007, starting dose 20mg for five days, and I knew within two hours of taking the first dose that I had found some friends. It was intended to be a short, sharp shock, to get me thro a rough patch (no drugs of any sort, not even the sulph, to get rid of an enbrel reaction) and then they were to be dropped once I resumed meth etc. Needless to say they weren't - I have tried from time to time, got as low as 5mg per day, ground to a halt and have been told to go back up to 20 then start again. Sisyphus, rock, hill etc etc etc. NO MORE. I no longer want to play this game and, oddly enough for me, I am beginning to fret about the long-term health implications of these seductive little monsters. I am also sick and tired of the 30 minute alendronic acid sit-up, tho knowing my luck I will still have to keep taking those! So, my plan.

I am currently on 15 blissful mgs per day, and have been since 01 January. On 21st Jan, I plan to drop to 13.5, vix 2x 5mg, 1x2.5mg and 1x1mg. I will stay on that dose for three weeks, then reduce to 13mg as follows: 2x5mg, and 3x1mg. Three weeks on that then 2x5mg and 1x2.5 (a mere 12.5 dose, only a .5 drop but hey-ho). Three weeks on that then 2x5mg and either 1x1mg or 2x1 mg, ergo either 11 or 12mg per day. I aim to keep each drop to either 1 or 1.5 mgs (with the occasional .5 thrown in for good measure) and thus, towards November/December time I should be on or at least damn close to zero and hopefully my body will be stepping in and doing what it should (yeah, right, like that's gonna happen). Does this sound realistic/feasible/sensible? I am hoping that doing it so gradually will give me the best chance of dropping these thodding sings and will, at last, shut that blasted nurse up! (You know the one, she follows me round the circus ring of life, as I pedal my unicycle, juggling like a mad thing - which reminds me . . . . )




Look what I found! Unicycling on a tightrope! Not juggling tho, so not as skilled as me. Thanks for reading. DD

julie47

Morning DD
your plan seems sensible to me, weaning you off them slowly and taking your time. This must be a better plan than dropping the dose quickly... it not working.. ,so then having to start again.
Sounds a bit like dieting, crash diets don't work losing a little each week is more beneficial asnd the weight likely to stay off.
(sorry about the comparison)
What do your rhummy peeps think? will they be with you on this?
All i can say my dear friend is that i wish you luck and hope you manage to see it through.
juliepf x (not very informative sorry)

pennycrayon

I hope it works for you. Sounds like a good plan. My fingers and toes are crossed. Xx

scattered

Remember that it will be harder once you get below 10mg, so 1mg every 4-6 weeks might be better. As you get to the lower doses it might help to introduce them really slowly, so alternate dasy on the new dose, eg: 9mg for two days, 8mg for one day and repeat, then drop to 9mg for one day, 8mg for one day, then drop to 8mg overall. This pattern can take about a month to get down to the dose you want, but it will be gradual and won't give your body that short, sharp shock.

It will take even longer to wean off once you're below 5mg because the body is more sensitive to the lower doses the longer you've been on steroids. You should be able to still use the pattern described above though.

I'm in the process of coming off the steroids that I've been on for four years. My RD told me that slow and steady was the way to do it, and not to be surprised if I found I couldn't come off the lower doses. Sometimes when you've been on them a lonig time, your body forgets how to produse its own cortisone and won't kick back in. Bear that in mind as you get to the doses below 5mg.

Good luck!

skezier

Hi DD,

I worry about the amount you take as you know so yep think its a good plan but have only been on them for 4 months my self, cus of the side effects, so was lucky.

I think Scattered has covered it very well there but with luck you will get to the lower does at least. that's got to be better for you eh?

Will keep the fingers crossed but not for a second as am off to see a decent doctor and then a rubbish nurse who will never get blood out ((( ))) Cris xx

scorpio

good luck DD, i am taking 5mg per day and i am also very keen to get off quickly.............

chris

stickywicket

DD, I think your plan’s basically very sound. I’d just suggest you stay flexible (No pun intended). If you’re struggling with a dose be prepared to stay on it a bit longer rather than sticking rigidly to a timetable.

Steroids have always been a miracle drug for me. I once, literally, couldn’t get out of bed. Doc came. Prescribed 10mgs. An hour later I was running round the house. I think Scattered has it spot on. Thanks to her input I now know why I used to find it near impossible to get below 5mgs.

Steroids are really powerful drugs and you can’t mess with them which is why I think it’s a good idea to try to wean yourself off them and why I’d liaise with my GP all the way.

Just off the top of my head – once you reach ‘the wall’ of 5 mgs, is it possible to get one of the slow release injections to help you through the next bit? Worth asking?

Good luck!

dreamdaisy

Thank you all, what a smashing bunch of folks you are. I know about the 'wall' of 5mg, I have smashed into it head first on a number of occasions over the years. I am generally an impatient person and I find the whole reduction thing TEDIOUS BEYOND BELIEF. (Sorry, had to shout.) I will be flexible about it, I do realise that these things never, ever go to plan, that my PA will (no doubt) put its interfering fist into matters from time to time, and that alternating doses may well have to be done (I really cannot be ***** with that, but will do so if required - and I knew you would pick up on that, scattered, you are so thorough! ). Truth be told, I am in a humungous sulk about the whole thing - I know it's a good, smart and sensible move but they are the only phacking things that make a difference. I must be mad. DD

frogmorton

Hi DD

Good plan!

In fact a very good plan.

A lot of though has gone into said plan.

If any plan is likley to work it is this plan

and I LOVE the unicylce

Toni xx

PS with you all the way with the reduction

dreamdaisy

Oh my darling girl, as ever you make me laugh and smile. Thank you, frogmorton. I sent you a PM - you found it yet? I hope it makes you smile! DD

tjt6768

Sorry for being so late joining on here, you know why hun.. I know bugger all about the steroids you're on but I'm sure you know I wish you all the best hun... You've been a big support to many of us on here so we'll all be here for you..

Be well mi dear..

PS, look DD, I've got mi dancing shoes back on, getting there eh?

Poppyg1rl

Hi DD,
Well done with the plan, I'm sure it will take guts and determination to see it through, but if anyone can you can! I have full faith in you DD all the best Poppy X

jennylynn

As everyone has said it does seem that you have covered all bases and are prepared for the various hiccups along your way (then again with this blasted PA you kinda have to be dont you!)

I just wanted to wish you luck and i will keep everything crossed that you reach your goal.

Jennyx

stickywicket

dreamdaisy wrote:

I must be mad. DD

You mean you've never been diagnosed???

dreamdaisy

Not officially. :green (read in a whisper) 'They're coming to take me away, ha-ha, they're coming to take me away, ha-ha, hee-hee, hoo-hoo . . . . .

tjt6768

dreamdaisy wrote:

Not officially. :green (read in a whisper) 'They're coming to take me away, ha-ha, they're coming to take me away, ha-ha, hee-hee, hoo-hoo . . . . .

http://www.youtube.com/watch?v=1d0QND_24DE

barbara12

Hi DD
Sorry late again....white rabbit has nothing on me....I do hope your plan works for you...but can I have your unicycle please.
Good Luck
Love
Barbara x

dreamdaisy

No, I am sorry barbara12 but you cannot, I will still need her for the wobbling and the pedalling and the juggling! This fat lady will still need transport, even if it is not one of delight! You fancy a spell in the den? Any idea where cherrybim is too? I have had a rough day, I could use a break. DD

mp1952

Hi DD

Just to wish you all the best with your reduction plan.. I've never been on pred (fortunately) so I'm afraid I can't give you any practical advice..

Take care

Marion x

cherrybim

I fully understand what a Sisyphean task it will be but....I've got a cunning plan :roll:

Instead of pushing that rock up the hill borrow a trebuchet from the marauding hordes and fire that rock up up and away beyond the top of the hill (a Roman Mark x should have sufficient wellie to manage it.)

With you all the way in your attempt to give up those wicked pills. I've first hand experience of the damage they cause. ( OH with devastating osteoporosis and two cataract ops)

Nipping over to the den now, get the bong going won't you?

Cherry x

dreamdaisy

Of course, not up to the whole bong, alas, will a bing do instead? DD

salamander

hi DD, I think you could get off them before Nov/Dec. My rheumy recommended to me a 1mg reduction a week. So less than six months. Check it out with your rheumy. Also, I found the lmg tabs gave me awful indigestion as they are not enteric coated so use soluble pred and draw up with a 5ml syringe.

dreamdaisy

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

julie47

DD you wont fail
we are all here right behind you to give you gentle pushes
take care
juliepf x

Wonkylegs

HI DD

I can empathise with your deep desire to be off the pred ...... as you know I failed to get off them at the end of last year, and tomorrow I aim to try to find out if I dare to reduce from the 5mg I've been on since November :roll:

Like you, I wonder if it is all worth the bother , but hopefully between us we can find the trick to doing it and finally kicking the habit (though mine is only a short-lived association with Pred I feel like they have taken me over!)

good luck and let me know if you find the magic answer

hugs
WOnky xxx

annie_mial

I'm another on the Pred reduction line. 9 years now - in fact it's the 9th anniversary of my starting date tomorrow!

Apart from a brief blip during the first year when I did manage to get down to 2.5 (less than 3 weeks) I have never managed again to get any lower than 5mg daily - until now!

Previously most attempts to reduce were marred either by flare-ups or by being diagnosed with something else requiring the jolly old steroids; asthma, another arthritic condition, numerous bouts of chest/sinus/ear infections, 'flu, just plain old withdrawal symptoms - the list goes on and on.

THIS TIME I have made it down to 2.5 for the second time and have been on that for more than a week now..........it's been hard going and the main reason I have not been posting much. However, I seem to have stabilized now, have been feeling better this last day or two and can (today) see some light at the end of the tunnel.

That's today (or tonight if you want to be pedantic). I hold no brief for tomorrow, it may well be the day I have to return to 20, 30 or 40mg 'cos I've developed jungle rot or some such rubbish.

........and I am not looking forward to the next reduction (to 2mgs daily, done very gradually) and will not be attempting it until I can feel I am fine on the 2.5. That is Plan A......it will very likely be plan M, N or lower as the year goes on.

My Rheumy will be very pleased if I am still on the 2.5 when I see him next month and I think he may well tell me that I must stay on that amount for ever (not if I have anything to do with it!). However at that small amount side-effects are practically non-existent and I am aware of that there are those who have been at that level for 20 years or more, so I have decided not to give myself a hard time if I can't go any lower.

There seem to be several of us in the Pred Reducing Club - shall we give ourselves a name?

Annie