the truth about Prednisone

Colin1 · 2. Dec 2013, 07:08

Have you been on long term steroids Prednisolone is bad for you, I know its a bit of merry go round and your damned if you do and damned if you don't, Its a bit like hobsons choice when it comes to dealing with pain, the pred works so well, yes I know they tell you its not a long term medication but im still on it ten years down the line. Now I have developed hypoadrenalism and the consultant thinks I may now have Addison’s disease. You all need to be aware of the side effects and long term use of these steroids. Here is a little sitre you can look at but ask you consultant what is long term and what is a high dose My GP thought 7 and half mg was a high dose I was on 25mg a day you should try and find out all the info you can on the meds you take. I don't know what I would have done without them when you are in so much pain you will do anything but had I have known from the start the effects they can have on you body I would have tried to live with the pain.

www.creakyjoints.org/content/cj-hot-topic-prednisone

Colin

dreamdaisy · 2. Dec 2013, 07:32

Oh Colin, I feel for you. I took prednisalone for four years but the fourth year was devoted to stopping them because I wanted to minimise my risk of further problems. They are 'miraculaous' in what they do but yes, that can come at a price. I was on the receiving end of a very stern lecture from my rheumatology nurse about what these little darlings do to us and that made up my mind. The quality of my life certainly declined once I was off them, I admit I was tempted to resume them to support me through our forthcoming house move but I have decided against. Make life easier and less painful? Why?

I also have to inhale them on a regular basis to control my asthma so that was another factor - I know that my inhalers could also lead to troubles. It is indeed a Hobson's Choice.

Take care mate, I hope the docs will be able to help you with your current predicaments. I wish you well. DD

stickywicket · 2. Dec 2013, 08:29

I'm sorry, Colin. You didn't need this on top of all the other rubbish.

Yes, I know long-term pred is a very bad idea though it does appear to work miracles. Like DD I have to use steroid inhalers (Breathing is one of my top priorities

) but I haven't done the pills for years and hope not to again though one can never say never.

Every decision has its consequences. Most meds have their side-effects. Sometimes it's a hard balance to strike between disease and meds. It can be all too tempting to go for the 'jam today' offer but pain is sometimes a safer option. We all need to make informed decisions about our meds.

barbara12 · 2. Dec 2013, 10:35

Colin I am sorry..you have enough to contend with..like you say dammed if you do and dammed if you don't...I don't take steroids but the antiinflams on top of the other meds I take, have caused me to have kidney probs....you take care Colin and I hope the test come back negative..xx

Mat48 · 2. Dec 2013, 11:27

So sorry about this Colin - this sounds like a pretty bad addition to your life. Personally I try to keep off steroids because they make me go off my trolly and also put on a lot of weight very fast. But sometimes this isn't possible without getting too inflamed and so the odd short burst is required. I met a woman who had Addison's at an Arthritis Care self management course a few weeks ago and she explained this condition. Mat x

Boomer13 · 2. Dec 2013, 11:46

Hi Colin;

Sorry to hear of your troubles. I hear you about differing opinions of docs regarding prednisone. My GP was very casual about prednisone and had me taking 15mg for two years without much benefit for myself. This dose made my rheumatologist turn white and nearly fall off his chair.

Thankfully, I'm off the stuff now and plan on remaining so.

Take care of yourself.

mike26 · 2. Dec 2013, 12:16

thanks colin 1
for this, im also on prednisolone and i to want to come down of them im
on 20mg day at moment and want to get off them in near future.
my rommy uped my dose for and in preperation for TNFS, soon to follow
But iv had a few problems last couple months(bad fall hurt my rib cag &
diagnosed diabetis) .
could have done without this

yes colin preds do play a roll in what we have but can be very dieveious little pills.
ive seen first hand what these can do to you(pysicotic behavior)
and i wouldnt wish that on anyone.

hope you can ween down of these colin when you can..
good luck mike26

Colin1 · 6. Dec 2013, 09:28

Yes it is a great pain reliever but my rheumy should have given me the bare bones instead of keeping me on it all this time.

Sticky I also think breathing is a priority LOL I to take the steroid inhailer
and I now wonder if these devils tic tacks are helping my breathing and just how low I can go im now back down to 13 and a half mg a day, Because im in the wheelchair no activity 18 months ago I was 11 stone and prepared to model lycra For DD and some of the other ladies now im 16 and half stone despite the fact that I diet. People like us tread a long road I don't quite know what to say, its not often im stuck for words but !!!

barbara12 · 6. Dec 2013, 10:04

Just for you Colin....((((())))xx..you are so lovely...

trepolpen · 6. Dec 2013, 11:56

hi Colin , hope its not Addison’s disease , one of my relations has had this for thirty years so it can be treated , she started it when she was at school after a she had a BCG vaccine , its very rare so hope its not

mike26 · 6. Dec 2013, 13:49

hi colin
like you say, why dont thay say it might give problems further down the road at least we would know.
youve been on them for 10 years (Wow) ,ive only been on um for 1 year
now ive been trying to get rommy to lower my dosage and he said he would after my new drugs(TNFs) in new year.
i to put on weight when i stopped working now im gonna have to watch
the xmas pudding and cream,chocolates,mince pies, :santa:
still mabee when ill can take charge of the drinks dept. :madnoel:
ill have to take up dancing i think colin maybe the quick step :santa:
good luck and merry xmas to ye all :madnoel:
mike26

Collywobble · 6. Dec 2013, 23:37

Colin and Mike, hi. I've been on pred for over three years now. Got to a low dose, then everything flared up, so they increased it again. Same thing is happening again now as I've finally got down to a cFouple of milligrams.

Although I react really, really well to it in terms of the relief it can offer, it has messed with my bloods and weight. I've gained about two stone at least. I'm on blood pressure medication, and my blood glucose levels are up, although since switching to a low carbohydrate diet, things are much better. Apparently I also have osteopenia too. My mood swings are horrendous, and I have severe depression, which apparently is another side effect. My hair is thinning at an alarming rate, which okay isn't a health threat, but it's the icing on a [XXXXXX] tasting cake!!

What I wanted to ask you though, have you been told to avoid carbohydrates? Steroids can give some people horrendous carb cravings, and affect the way you metabolise them, hence the huge weight gains and the slippery slope to type 2 diabetes. For the life of me, I do not understand why most people are still advised to eat frequent meals which include carbohydrates - apart from non starchy vegetables, we just don't need carbohydrates to survive. Yes, they taste good, but many people have successfully reversed their type 2 diabetes just through diet. Try to avoid carbs, refined or unrefined - pasta, potatoes, bread, sugar, baked goods. I know it's tough, but it can make a massive difference. Avoid the low fat foods, they are often packed with sugar, just to make them taste better!!

Check out the diabetes UK website, they have a low carb forum, with lots of useful info.

But, a big but ( yes, I have one of those now aswell), they did get me mobile again, and help lessen the pain. I've also said if I had known what they would do, I wouldn't have started them. But then I remember the pain, and how I just couldn't walk. It is a double edged sword, and the only effective treatment for my polymyalgia. Unfortunately, because they are struggling to find a suitable medication for my RA, I have been relying on steroids for that too, but the damage has apparently worsened and my hands and wrists are eroding like Beachy Head!

I wish you the very best, and hope life improves for you both.

[text edited - swearing Mod YEH]

mike26 · 7. Dec 2013, 09:04

hi collywobble
yer not sure yet, i have cut out all biscuits,chocolate,cakes,sugar,all
sweets etc etc etc.
When i see the diabetic nurse next week she will tell me what i can and cant eat.
someone did say on this site avoid sugar, and i certanly think this helps a lot. also say to us try and keep active but this can be limmited and difficult with arthritis.
i do try to control my arthritis and think im in control ,but it often gets the better of me anyway.like you say its a double edged sword and ive found out soon as i lower my preds the arthritis flares up.
hope the depression gets better for you,my roomy did say tho when the (TNFs) kick in he will lower my preds..will see what the diabetic nurse tells me.
good luck mike26.. merry xmas :santa:

dreamdaisy · 7. Dec 2013, 11:39

Pred is a great drug for masking what is actually happening - it cons us into thinking all is a great deal better when in fact it's anything but. It is a necessary tool from time-to-time to tide us over but as a long-term treatment? Nuh-uh.

DD

mike26 · 8. Dec 2013, 12:35

thanks for that
dreamdaisy im relativly new to this malarky,and what your saying im sure
is wright they do mask problems over.
hope to gome down off them soon.
thnks dd and mery xmas..
im going for a long walk :santa: :santa:
mike26 :madnoel:

suzygirl · 8. Dec 2013, 12:43

I second collywobble's excellent advice. Once I cut carbs my sugars stabilised, bread was my biggest enemy. I find protein is better, a yoghurt but check the sugar and carb content, is good if you are hungry. I have to plan in advance what I eat all the time, it is a nuisance.

I would hate to have to take pred again, yet I may have to in the future. It can be a necessary evil.

the truth about Prednisone

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