Steroid reduction!!

Hi,

Hope everyone is as well as they can be?

I am just posing a question cos I am am now coming to my wits end with my asthma and steroids ( as probably many are)....I have been on steroids for a long time now and my cons has told me that I am too steroid dependent now, that everytime I reduce my steroids I end up in HDU.....I have recently been to see my cons as was due to start methotrexate to help me, but because my liver function tests were high I couldn't start it so he repeated the tests and they were even higher so can't have it all at the moment, so he has sent me back to my practice/nurses and GP to set up regime to reduce my steroids extremely slowly, and I mean slowly....I have a concern about this as myself, my nurses and GP have been here so many times before and always failed, and I am just worried that I will end up unwell again which I do not want, my nurses/GP are monitoring me weekly with a proper review every 2 weeks....

I was wondering if anyone has been here before and if there is anything else I can be doing?

Thanx Sam

[KateMoss]

Hello Sam!

I too am steroid depenedent and at my wits end with them - can't live with them, can't live without them. ( I am having problems with the side effect - long term steroid damage which has really come to a head this year - tendon & stomach problems but i have beeen on them 10 years etc)

I am on 10mg which really is my minimum though I will try to lower it by 1mg a month when up to it.

the higher the dose, the bigger the jumps down you can do e.g. 40, 35, 30 etc but I find when I get to 20, I have to go down by 2.5mg to 10 then by 1mg. I can drop from large doses fairly quickly, weekly etc but I listen to my body, if I have side effects or withdrawal symptoms with last more than 3-4 days I may go back up a bit. Monthly or even longer is better the lower you get, yes it is labourious!

I find though now, if I am on a fairly low dose such as 10mg, I can have a 7 day course at 40mg then drop quite fast back down to 10mg, in 5mg or 2.5mg drops but any more that 2-3 weeks at a high dose, it has to be slower.

I hope this helps a bit..... just take it ridiculously slowly. It may take a year to get back to a low level.... and then you could get away with 7 day high dose when needed and drop quickly. This is how I can cope with it. Though I wish I could get of pred altogether...

Kate

xXx

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I so hate them, i am the same, can't live with them and can't live without them, lol....

My reduction regime atm is to be reducing by 2.5mg every other day i.e. 40mg one day and 37.5mg the next then 40 mg the next and like this for two weeks and then I will go to 37.5mg/35mg alternate days for two weeks and carry on that way.....This is to me is really really slow, I seem to struggle with the reduction.....

But thanx for the help Kate,

Take care

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I have to reduce by 1mg increments from 20mg. But like Kate I can drop in bigger increments the higher the dose. From 30mg I normally come down in 2.5mg. I have found the easiest way to do it is to see how my lungs are and I also tend to take in to consideration what activities I plan and whether dropping steroids on a particular day/week is a good idea. For instance I get far more tired and pick up more infections at Uni so I shall slow down to 1mg every couple of weeks or even a month once I get back there.

Good luck with the reduction. It is always worth having a try if you're allowed!

xx

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Good luck to everyone trying to reduce their steroids. I've been dependent since 2005 & have got down to 5mgs on 3 occassions now but then seem to have a bad attack & the cycle starts again. This time I was on a higher dose for far longer than normal &nits taken from April to get fro 50mg to 10mg. The drop from 25mg to 10mg I've done over a month which I now know is too quick. The cramp is the main problem but I'm stubborn & trying to last it out as 10mg always used to be my usual dose. I've the endocrinologist on thursday & m hoping to get some help to reduce or at least stabilise the dose. I know steroids saved my life but the side effects I'm suffering now are also making it unbearable & may even rob me of my attempt at ivf if I can't stabilise at a low enough dose.

Hope everyone else is finding the reduction bearable

Take care

Rabbit

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thankyou for your replies does anyone know what i shoud except during and after operration sorry i know its nothing to with asthma its just im on this waiting list for op and they know i got brittle asthms snd my con said it would be better for me under genral thanks alll xxxxl