It is wth some trepidaton I am starting this thread, but I am curious and it is not meant as a ""are you for real type"" thread so please don't start any wars. However I am curious about pred dosages I am thankfully not at all steriod resistent and so apart from a few odd times where I have had a different Dr I have always been given 40mg as top wack dosage (IV hydrocort is not counted for this thread), all my local hospitals (I have a trilogy now) agree that unless you are steriod resistant there is little point in going above the standard 40mg. But I read about a lot of people taking loads more than 40mg so I have 2 questions: why do some people become resisitent is it another side effect I have waiting for me (just to make a full set)? And do some costa's just keep wacking up the dosage if the 40 does not work right away?
Bex
35 Replies
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I'm on a 10mg maintenance dose, ad infinitum.
GP has her own ideas with me (don't they always-just following their text book I guess!). Always straight back up to 40mg for 7 days and she has even tried to get me to take 50mg and 60mg at odd times before too, although I''ve generally ended up going in when that bad, instead!
Was on 40mg non stop for most of 2005, but RBH realised I was either steroid dependent or resistant, whichever, pred really wasn't doing it's job, so when I was in over Christmas, they got me down very quickly. Went to 30mg overnight for 2 weeks, then down by 5mg a week until 15mg then I actually got myself down to 10mg on my own and they have kept me there.
I thought that Pred had the same guidelines as Amino, 5mg per certain amount of body weight etc, and so I was told 40mg was way too high a dose for me to be stuck on at 45Kg, plus it didn't give me any logical room to increase it when really splatted.
RBH have now instructed that I should never go higher than 30mg for my top whack. This needs to be taken into consideration by local costas who always seem to start you at 40mg.
I cannot imagine what it must be like for those of you regularly taking double that amount. I feel very 'wired' and hyper on a high dose, and get very fatigued, and extremely breathless when reducing.
Amino is my saviour, pred is a kind of 'well, it works for most' type of maintenance!
I am no expert but for those who respond to pred well I read that research showed that there was no added benefit of a dose above 40mg. I have never had more than 40mg, hosp have just added IV hydro. I would really like to know more about this...in an i'm interested way not disputing whether higher doses are of any benefit as I know they are to many people.
Emily-ditto your thoughts, as high doses obviously are of benefit to some people in certain instances.
However, I think in other instances the body becomes tolerant of pred and you keep needing more and more to stabilise lungs. I think this has been the case with a few here who have been on it for years and years.
Could Wheezer and Den to name a few of my friends, please step in here and clarify.....
However last summer when I was having terrible trouble with maintaining my SATS, every time I splatted and ended up in A&E, they seemed to think higher and higher doses of pred would do it as I was already on 40mg so had several occasions when it was upped to 60mg. Yeuch!
if you're interested, Emily, there is apparently also evidence to say there's actually no benefit from going higher than 30mg.
Now before i get shot, obviously as Sus and Bex said, people take more due to a form of resistance, and no one is a clinical study.
Top i go is 40. Recently I've been up to 50mg a few times, apparently BTS changed guidelines and now say 40mg or 50mg (correct me if they've changed this back). I thought 50mg worked first time round, but on reflection i think it was a coincidence. Yep Bex, basically they panic 40mg isn't working, especially if i've been on it a while, and put it up to 50... bit of a case of ""lets throw anything at it""
It may also be to do with size? I get taken off 50mg, and people are reluctant to do it anyway as i'm particularly little, and i know sus is too, not sure about anyone else.
Maybe absorption too? As for is it a side effect, personal view is yes it is, although not sure there's any evidence for that.
God it sounds like i'm calling others heffalumps! I'm not, in my case i mean height wise im small.
that help at all? I've sort of always wondered too
Jenna, absolutely!
Why is it that my entire team of Docs tell me this stuff is quite literally POISON! And then sign another script for it!
It is a pity that we don't have a more generalised synacthen test before we are just plonked on Pred. Then we could possibly???? gauge how well our Adrenals are coping and therefore how much we need before being given huge doses that may be way above what would actually work????
When I was coming off it, rather quickly compared with most here, so a bit cold turkey, I did come across people on another site for Arthritis sufferers who often had doses of 80mg say, just once a week. I think it's done that way in MS too. Not sure of the benefit of doing it that way but I am guessing with asthma the urgency to breathe outweighs anything else so we have to load it in every 24 hours.....
To be honest i've always been very angry about how I was plonked on the stuff at the beginning. I was never told what would happen, was told about moon face, which to be honest i already had as i was pretty much constantly on 40mg by the time i saw a consultant,, and that i would gain weight only if i ate more. Then put on a 25mg maintenance dose with no talk of osteoporosis etc. No singulair or aminophylline first.
Now i constantly have comments about how i need to get off the stuff by medics... as you say just as they're upping the dose or writing a new script.
I do wish they considered alternatives first. They say it was the only way to guarantee i'd be ok, but i would have liked them to try.
I'm no longer on Pred but Betamethasone tablets and I'm not classed as steroid resistant just need MASSIVE doses to get any effect when I was on Pred and that is slightly better on Betamethasone !!
Jenna I always felt a bit angry about it too. Have even heard it said that the little red pills don't contain any calories. What a thoroughly nasty comment.
I have this way of thinking now, that for any med I~am given....I will proverbially throw it back at the doc in question and demand they take it first to see what it is like.
The h**l we go through with Pred and Amino, well, let them see what it is really like before they use it on us!
I had a bad weekend the weekend home between the sub cut trial I upped my dose from 25mg to 40mg and it made no difference at all to the attack. I am on a reduction now although have been told to stop reduction for while whilst my lungs adjust or I start taking it easy or maybe my amino levels come up, dunno really just things not wonderful. I don't seem to get the dire crashes on reduction that others get thankfully.
Bex
I have always been on 40mg couple of times the Drs have suggested going higher i have always refused. At 40mg not only do i become a freak i dont sleep even on sleeping pills and i start eating the carpet! I am not joking last year i put on nearly 4 st after being on pred more than off. Poor Speedy had more than one phone call of desperation etc. I cant cope on pred at all i hate it with avengeance. I know we need it and am grateful as others cant take it. I do everything possible not to take it. I also found last year each course i had took longer to work and as soon as i started to drop the dose i would pick up another infection. I have been fortunate this year this is my first course but it isnt helping as quickly as i want it too or need it too.
As the other Emily and others have said, as far as I know in asthma there's no evidence that going above 30mg is beneficial, although there is evidence of benefit for higher doses in other conditions. But as they always say to us - 'absence of evidence isn't evidence of absence' - and trials aren't often done on brittle asthmatics anyway. Current BTS/SIGN guidelines do recommend 40 - 50mg daily after an acute attack 'for at least five days or until recovery' - not based on any evidence but 'recommended best practice based on the clinical experience of the guideline development group'.
Personally, I've never been on higher than 40mg, and my current consultant doesn't believe in going any higher than 30mg. I know other consultants locally who do go higher though, and I know people who it seems to help. I don't think it's done in a very evidence-based way though, it seems to be just trial and error and individual preference.
I seem to get some benefit from 30mg, in that I notice if I try to cut it down, but equally I can be on 30mg and still have an acute excerbation, end up in hospital etc. I guess I would class myself as partially steroid responsive. Like most people pred is a friend and an enemy!
Interesting stuff folks thanks for the replies. No replies from the many steriod resistent (is that the right word) folks on here, did you always need huge amounts or has the amount crept up. And the big question is are some people simply born steriod resisitent or is it yet another side effect of the dreaded pred. I really am interested in knowing. What are the signs of steriod resistence? I took 40mg for ages and still had crashing great attacks, which would suggest that the pred really was not doing much good, RBH checked to see if there was a problem with pred and apparently I am normal (good thing too as my theo problem is more than enough for me), so I am not expecting to recognise any signs I am just curious about how they work out who needs more than 40 and who does not.
Bex
bex
I was looking this up recently and found this article very interesting. It does state there are two types of steroid resistance.
I am one of those special peeps classified as steroid-resistance, also with malabsorption problems. My daily dose is 20mg, but when bad I have been put up to 80 and 90g a day (I weigh around 50kg), still with no effect. I now only go up to 40mg a day, but if unwell I just have IV hdrosortisone qds for many days. Like so many, doctors have whacked me on to enormous doses in the past, but in general I find it easiest just to do as they say and keep quiet, knowing full well that it will make no difference to either the side effects or the asthma!
Despite being on pred for many years, I show no side-effects at all (apart from a slightly spotty back on high doses) - I haven't gained weight, my bone density has increased slightly, I don't have a moon face or stretch marks. Obviously this has left me very vulnerable to accusations in the past of not taking it, but at Heartlands they did lots of complicated blood tests over a number of hours and were able to prove that the dose of pred vs. that of cortisol within the body showed that I only absorbed about a third of what I actually consumed.
Unfortunately, despite all this, my adrenal glands seem somehow to have packed in. This makes no sense to anyone so I now have to go into hospital for a few days to do a long synacthen test to confirm whether it is actually related to the steroids at all. Seems bad luck given I haven't had any of the benefits of pred!
I know this isn't really an answer at all, but I'm just adding my tuppence-worth. I hope eventually to get off hte pred, not least because it doesn't appear to be doing me any good at all. HOwever, got to get adrenals sorted first...!
xx
Sorry - although leaving a long mega-post, I forgot something crucial!
I have actually always had this response to steroids - certainly in my case it has not been a new development but rather always the case. I don't know if this is reassuring at all?!
xx
Speedy, thanks for that link. Interesting read. I have become quite stuborn about never going above 40mg (although thankfully no-one has suggested anything above 40 recently). I have a theory that too many cons are just throwing more and more mediction at people without properly looking into if it likely to work and if it is worth risking the dreadful side effects. I think this applies not just to Pred but also to other medication. I guess it is linked with the problem some get of getting a referal to a specialist difficult asthma centre for full checking to see if there is anything else that is contributing to problem.
Bex
Well im 15 and i can take up to 60mg normally 50mg and a, quite suprised not many people take this as i took it for normal.
Bex I am the same regarding stubborness and meds. Until recently I would just take whatever was being thrown at me but now I tend to be more cautious as side effects mount. I feel that drs so easily just say increase ure pred dose esp in A&E. It wasn't until a couple of months ago that sum1 finally started looking at the causes of my unruley lungs rather than adding more and more meds to treat the outcome/mess!
Bex
I do worry similarly that some docs just throw anything and everything and see if it works. Asthma is a difficult subject. A few years back I ended up on pred for two years constant when it wasnt ashtma. I had been in and out of costa a lot, HDU etc and saw no one seemed to know what was wrong being told it was asthma then it wasnt. After a lot of persistance by me and not being beaten I ended up seeing a proff who specialised in difficult asthma, she found I had serious baterial infections in my lungs and infact I had ashtma but not as bad as I was being treated for. The pred was making them worse by hammering my immune system. I also got pseudomonas form hospital something now I have to live with. The chest infections were treated over 6 months and then I was off pred in another 6 months. I am so pleased I had fought the huminilation of the docs. I saw 4 chest consutlants in various counties before seeing the proff.
Now things are different for me as things have changed I have bronchiectasis and been left for life with pseudomonas and problems with ashtma for different reasons but that was two years of my life being on drugs I didnt need and leaving me with the pseudo to remind me .
I have been constantly on pred for 4 years plus have lost track aiming for a maintanance dose between 5 and 7.5 mg upping to between 20 and 40mg during flare ups but always reducing again.
I had Kenalog injections as a child twice during the summer and then have always needed about 5 or 6 short courses a year. As time has gone on the 3 day short courses have turned into 5 and 7 days and then into you must reduce slowly courses and then owing to relapses and since 2004 an apparent need due to pancreatitis to avoid me having high doses i've got stuck permanently at the 20mg mark and had to reduce by as little as 1mg a month until the whole thing has merged into me being told i'll never come off it.
As you know i've been quite unstable recently and have had 4 admissions. I was already on 40mg so it was upped to 60mg and then 90mg for a couple of days but i still ended up being admitted and given even more iv hydrocortisone and adrenaline (twice) but not for some wierd reason IV theophylline or magnesium this time.This has never happened before when i've been so unstable. They do have a new respiratory consultant and i wasn't admitted to my usual hospital so perhaps thats why.
At the time i wasn't well enough to query my treatment or argue against it as being on cyclizine because of the antibiotics and increased oral theophylline just knocked me totally out of it so continued the high doses of pred despite having previously had steroid induced pancreatitis which they are now querying whether that actually exists as a cause so it's all very very confusing to me.
The consultants have been discussing whether i've ""used up my glucocorticoid receptors"" (What!!) and am becoming steroid resistant and also whether i have an absorption problem with the enteric coated tablets. This time for the first time aparently i look ""cushingoid"" (thanks Dr P) with my moon face skinny wrists etc and on 50mg i was having all the pred cravings, mood swings etc so must have been absorbing it surely. Now i've reduced back to 45 i'm not retaining as much fluid or as stroppy so who knows whats going on!
I'm now on the uncoated prednisolone and they've even given me some 25mg ones as well as the 5mg which has made taking them a lot easier.
At the minute i don't know enough about steroid resistance to give anymore info i have an appointment mid June and have a huge list of questions already (like am I? and why? and what exactly does that mean? and if so why am i still taking them?)
I'm just pleased i seem to be relatively stable but wish someone could wave a magic wand and get us all off it permanently.
Steroid resistance
There was a paper published in the Journal of Clinical Investigation recently that suggested, based on lab tests rather than clinical trials, that vitamin D might help to make steroids more effective in steroid-resistant patients. They were going to go on to do clinical trials.
I guess a lot of us are probably already on Vitamin D for bone protection with the steroids; I'm not, and wanted to try it after reading this paper - after all, it's cheap and non-toxic and might help - but consultant didn't seem very impressed with the idea!
Can't find the reference right now but I can e-mail anyone a copy of the paper who's interested.
Em H
PS - Thanks for the link to the National Jewish paper, Speedy, hadn't come across it before! Very interesting stuff
Or now they tell us that a bit of sun every day is good for us as it generates vit D but I think the steroid thingy may need a bit more than just a quick bathe in the sun
Kate
XXX
This is a bit of a hot topic in my house at moment. Sean has been on daily pred or dex since he was 3yrs old,he is now 10. For the last five years he has been on 8mg dexmethsone daily , well almost I think we have had maybe 2-3 weeks off, but continued to have loads attacks/admissions. During recent admission at RBH he was put on 20mg dexmethsone BD, I was informed that 4mg dex= 25mg pred so he was on eqiv of 250mg pred. On top of this he was given methyl pred iv for few days as well. The cons at RBH then decided that as Sean needed such massive doses he my have developed a steriod resistance and took blood samples to be investigated by some doc at RBH who specialises in resistance. We are going to RBH tommorow to find out if he is resistant and to find out if they starting him on cyclosporin/methtrexate as steriod sparing agents.
I have 3 main issues with it, a) If he resistant why am still being told to give it
b) If he resistant why has he got moon face,acne,mood swings,suppressed adrenal gland.
C) If there medical proof that over 40mg isnt needed why has my son been on higher doses for years.
I know there will be some reading this who may have difficulty believing a child would be taking 250 mg per day for couple weeks and for this reason I was unsure if I should post but as Sean has been to Peak I know people can varify we are genuine.
We are hoping to get some answers tommorow so I will let you know what i can find out and it may help some others who may be steriod resistant.
Julie xx
Julie, thank you for posting, I said at the stat of this thread it was not about ""are you for real"" but about finding answers to some of the questions that run around my head during those sleepless pred nights. The more I read the more I am worried that there is a culture amoungst some resp cons to take one look at the difficult/brittle asthmatics and just throw more and more meds at them, without actually stopping to see if they are really needed or justified. As you are under the RBH I hope you will get some answers to your questions. I have a quickie question for you do you see the same Proffs as the adults to Durham/Newton-something/Chung or do you see a kiddies asthma specilaist?
Bex
Bex i've been up doing 2 hourly nebs for Sean since thursday so i dont even know who i am let alone if i am real I only mentioned it as i know the doses of most of his drugs are way of scale so thought i would say it before someone had a niggling thought. God im rambling now, anyway.........
There is a large peadriactric (sorry, can never spell it) team at RBH. Sean is seen by Proff Bush in outpatients but on the ward thy change cons weekly. I also have concerns at the casual way steriods are thrown about, all i keep thinking is I can see alot of damage being done on the outside what on earth is happening inside. What i find really odd is that steriod sparing agents have been discussed on and off for five years, and we are waiting for the big decision to be made tomo and yet the steriod dose can be put up to massive levels in blink of eye. Both drugs immune suppressants and have potentially nasty side effects so why is oine drug given so casually. aconsidering Sean only ten and his adrenal gland already suppressed i have real concerns about the damage being done long term.
I have mild infrequent CVA and have never experienced pred (touch wood), however, I have a very enquiring mind and have had numerous discussions on the old AUK boards about pred and the effects that it has on the immune system.
In my mind, it has become clear that taking pred reduces inflammation of the airways but also reduces the T-cell ratio thereby creating a window of vulnerability. There appears to be a number of people who post here, whose T-cell (CD4:CD8) ratio appears to be suppressed and even inverted. Surely taking pred (long term) will only serve to make asthma worse by masking the symptoms of allergic asthma. I realise through reading the boards that some need pred just to survive, but surely there must be other safer forms of medication for asthmatics?
I believe that many asthmatics suffer from immune system dysfunction and would benefit greatly from taking medication that stabilises/corrects the CD4:CD8 ratio rather than taking pred which causes immune system suppression and enables a never ending cycle of infections to take hold thereby exacerbating asthma and necessitating further treatment with anti-inflammatory steroid drugs and thereby allowing the downward cycle to continue.
In some cases individuals cant stop taking pred because it appears to be masking other serious forms of immune system dysfunction/auto-immune disease which only become evident when the pred is substantially reduced/stopped.
I wish I could offer a solution but this subject is much to complex. Perhaps someone more qualified could answer my question - It is not possible to modify/manipulate the T-cell ratio (using medication/gene therapy) to boost/stabilise immune system function? I know that some people have had good results using mast cell stabilisers like Intal, could Intal (prescribed more frequently during the 80s) help provide T-cell stability and thereby reduce the necessity to take long term steroids like pred?
p.s. Thanks for the excellent link speedy.
Take care,
Derek
Hey Julie,
Apparently the majority of the time steroid resistance is localised ie your son will still get moonface etc, it just has little effect on his lungs.
NO idea why, just thought i'd stick my head in say it was possible xx
Julie, you poor thing you must be absolutly shattered, I hope Sean picks up soon. Over in the adult side they have war against the dreaded pred, they work hard to get your other drugs right so you can reduce your steriods.
Good luck at your next appt
Bex
Steroid resistance
Julie, it's not that there is medical proof that over 40mg isn't needed, it's that there *isn't* any proof that over 40mg is beneficial - or not proof based on large good quality randomised controlled trials, anyway. That's probably mainly because the trials haven't been done - and if I were being cynical, I would say that they are unlikely to be done, because drug companies wouldn't fund trials involving pred, which is a generic and cheap drug.
Many clinicians do believe that higher doses are beneficial, based on their own experience and ancedotal evidence, and of course experiences like yours and Sean's is 'proof' of a sort in itself, just not the sort of hard trial based evidence demanded by the scientific establishment.
A lot of the side effects you mention are caused by different mechanisms of action than the primary anti-inflammatory effect - for example, the water retention is caused by the effect of steroids on the kidneys, making them retain salt and water, and the acne is caused in part by pred having mild testosterone-like effects.
Derek makes some very interesting points which I don't really know enough immunology to fully comprehend! It's true that steroids are a very crude tool which cause a whole range of suppressing effects on different parts of the immune system, some beneficial, others not. I think part of the problem is that we don't know exactly which effects are the desired ones in asthma. There has been more work recently on targeting specific immune cells or chemical messengers - the leukotriene antagonists (montelukast (Singulair), zafirlukast (Accolate)) are one example of a highly specific drug which targets one of the chemical messengers which may be involved in some people, the new drug Xolair, which targets IgE, is another example. I think there are more in the pipeline. trouble is, these drugs work on some, but not everyone.
Asthma is such a vastly variable condition though - it really isn't one illness at all. The big trials on these new drugs tend to lump everyone in together, so if there is an effect on one small subtype of asthma, the result is likely to be lost in the overall analysis. Perhaps in the future instead of just 'allergic' and 'non-allergic', 'brittle' etc, we will talk about having 'leukotriene-induced asthma', 'histamine-induced', 'IgE-induced' etc and will all be on a specific drug to conteract our own particular poison. Until then, we are left with the crude sledgehammer of steroids.
We have to remember, as well, when we are trying to generalise from trial data, that most of these trials automatically exclude brittle asthma, children and often women as well. In a way, we all have to be our own clinical trial, and push the docs to try new things whether there is formal evidence of effectiveness or not.
Sorry to go on so long! Julie, I hope Sean gets a bit more sorted soon! RBH seem quite into this business of steroid resistance, so I hope they have some answers for you.
Emily H
Julie, how did it go with the RBH, did you get answers to your questions? I hope Sean is OK and thant they also managed to think of something else to keep Sean stable.
Hugs
Bex
I've had this convo over Pred at 80mg with cons many a time before my swap and he said in short term (upto 4 weeks) it can help in SOME people !!!
But in those who are resistant in a given way it makes the resistance worse !!!
I've never been testes for resitance but since being on Betamethasone tablets (high glucocortoid activity but lower mineral coricoid activity) I've found mood swings and WATER retention have eased a GREAT deal !!!
But I just find even though right now i am on 12mg Betamethasone (equiv to 80mg pred) it defo feels like it is helping ALOT more than pred ever did to start with !!!
Just had a re-read of some of this fabulous discussion here.
Speedy: I have always used the National Jewish info: They are one super hospital and so innovative in their treatment. Their explanation of steroid reisitance is spot on and comprehensible too. I actually have an online friend who is a patient there and I marvel at some of her treatments. And I thought RBH were way out!
Kate: Vit D discussion is a biggie and a way to go forward in all this-they are funding a lot of research here in the UK at Imperial with RBH I think.
It would be interesting to find out how many of us are prescribed extra Vit D instead of, or as well as Fosamax (Alendronate) for our Pred induced bone thinning. Especially those whose can't do dairy.
Pity they can't prescribe us 52 weeks of the year in somewhere very sunny!
Several people have remarked on the Steroid Resistance idea.
Is there actually a definitive way of tesing for it, apart from looking at one's absoption via a blood test, and adrenal function by way of the Synacthen tests?
I was said to be encroaching on being Steroid Resistant as they simply couldn't decide whether my exacerbations were any the less for having taken high doses of pred, long term. Seeing as I didn't have the almighty splats that so many get when withdrawing pretty quickly from these high dose lengthy courses, it was decided that I may be Steroid Resistant, as I wasn't following the old text book pattern!
However, if I miss more than a couple of doses of Amino, I will splat immediately and be gunked up to the eyeballs, so my wonderdrug isn't the steroid after all, and maybe my team were right. Although, to protect my Adrenals and the fatigue factor that complete withdrawal brings with it, I am being kept on 10mg.
I think I read on Speedy's link there is a test for resistance but cant remember what exactly it said!
Something to do with monitoring over two weeks with FEV1 values or someat and that the NJ then test for cell response to steroids or someat!
(Right at beginning of article I think!)
I believe if I remember rightly that the synthacen test measures adrenal function!
But please don't quote me I believe the resistance test is different!
sorry for delay in reply i've not been online. Seans con at RBH says he clearly has steriod resistant asthma and he is awaiting instruction from a resistance doc in RBH to figure the way ahead. I was bit dissapionted as I was hoping for definate answers/plans but I guess it takes time to get all the info together. The con is definatly starting him on cyclosporin at end of june due to his resistance. Apparently in the early days sean needs weekly blood tests till dose is right and they have to be done exactly 12 hours after last dose, con said its not a drug to be lax about and get wrong hence the delay till end june so proper plans can be made with the local for the blood tests.
I presume once the cyclosporine starts the steriods will be weaned but will ask more when i go back.
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I only mentioned it as i know the doses of most of his drugs are way of scale so thought i would say it before someone had a niggling thought. God im rambling now, anyway.........
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