I was just wondering what the protocol is for pred weaning, i am due to go to RBH next week for pred weaning but am not sure exactly what to expect any experiences? etc
Also i know that it takes a while for me to feel the effects of reducing my pred like i'll start to get ill again say 2 weeks down the line .. is this common?
katie xx
Katie, everyone needs to come of pred at their own rate so the RBH will no doubt have something planned for you. Is this to get you down from maintenance to nothing or just to reduce your maintenance level?
Bex
no - idea ... i think they want to see what will happen going beyond maintenance dose ... i was just thinking do they reduce slowyl or stop all together or what ?
What is your maintenance? I suspect they will stop it slowly, even the RBH can't magically turn on your adrenals, if you maintenance is low enough they might be able to cut it so far and do a test to see if the adrenals are waking up though. I can't remember how much you need to get down to do that test.
This is where RBH and my endocrinologist disagree big time, major arguments so anyone with medical knowledge feel free to correct!
The body naturally produces equivalent of 7.5mg pred. RBH will do adrenal test after converting to different type of steroid at that level. I had short synth test at RBH and based on results was referred to endocrinologist.
My enocrinologist says its a waste of time the results are meaningless and everyone on high dose pred for a long time (long time being 5 years plus for me) has affected adrenals to some extent and so does no tests until down to about 4mg at which point he will admit for tests to see whether need to stay on steroids long term but his view is that if you have severe asthma you will always need steroids at some point and therefore testing adrenals is waste of time you should just take the minimum you can and if feel really rough quote ""pitch up at the old dept as usual"" which i presume means A+E .Cheery chap isn't he.
RBH were brilliant and really positive that i would be able to come off pred albeit very slowly.
I have to reduce slowly 1 mg a month and then increase if ill infections etc so its a very long road.
I wouldn't worry about it too much theres nothing you can do until you see how you go when reducing.
hey marmite and bex, ta for the replies ... maintenance dose is 15mg currently on 25mg so we will see... thanks for the insight i think i ll just have to wait and see i can see this being a long process ... lets just hope its ok before starting uni!! xxxx
Hellooo!
I ween down quite slowly when I get down to 15mg. I have just dropped from 12.5 to 10 and my joints are screeming a bit. Incidentally, Marmite, I have nver been able to get any lower than 7.5mg over the last year.
My consultant has shied away from any tests saying 7.5 or even 10 is an acceptable low dose to be on. I might push the subject further......
Katie let us know how it goes!
Kate
XXX
Hi Kate
12.5 to 10 is quite a big drop! I think like me you've been on pred for years so i would definitely push it with your cons IF your lungs are stable. Locally they were quite happy for me to sit at 40mg for months and months it was only RBH having the attitude of lets see how low we can get you to that prompted any sort of endocrinology input. However I'm in agony if drop more than a mg a month under 15. I've just reduced to 11 and am suffering, lungs protesting too.
Thing with reducing long term pred is its SO FRUSTRATING you just get to a point where you think you can see hope of coming off it and bang you have to up it again and back to square one.
I've now been admitted twice with adrenal insufficiency due to pushing it and reducing too quickly/not recognising i was ill and increasing in time so you really have to listen to your body and follow the medical advice to the letter unfortunately I'm not a patient patient!!
my cons wanted me to reduce by 1mg every 2 months but that would have taken too long so we've agreed on 1mg per month. am finding it a slow and frustrating process, especially as my lungs aren't impressed!
Mmm, perhaps I should reduce a bit slower. Wrists are really achey today, but as long as the lungs behave, I will persist. Though I may end up going up a bit next week as I am volunteering for KA holidays!
I wonder if my headache is related a bit to the lack of pred.
Though as soon as I start getting light headed I pop it back up a wee bit.
I think is varies from person to person and how much you can cope with the side effects of lack of pred and how much your body misses it.
I agree very much a person to person thing - i'm a total wimp!
Hi Katie-Lou
I have been on high dose steriods for about 8 years. I have been trying to come off them with the help of various medical people for over 2 years. I have had long xanthin ( if I have spelt that right) and have been told that adrenal glands do not work at all and will now be switched to hydro cortisone instead of pred.
The side effects of coming of this nasty drug have not been good for me and some days are worse than others mainly joint and muscle pains and very tired, but I just get on with it.
Hope you get on OK RBH is the best place to be.
Good luck.
LIsa
Hi Lisa
what dose of pred did you get down to before were switched to hydrocortisone?
This is why i was referred to endocrinology as RBH recommended i was switched but local endo do not agree.
Marmite
thanks for all the support and pre warnings i will let you know how it goes and what they propose tomorrow ... but atm the weather isnt helping the old lungs but hey ho!
katie x
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