Prednisolone

[pollyjj]

I am ok at the moment but am dreading the next infection when the docs say antibiotics and steroids.

The steroids make me so ill I said I will never take them again, does anyone know what other treatment can be given?

pollyxx

[Hidden]

I don't know of other treatments Polly but I stopped using the steroids quite some time ago, after hearing of another COPDer that also rejected them. I was given them with every course of antibiotics and have refused them for the last 3 years because I felt so ill when taking them. I have not noticed any detrimental effect from not taking them, my infections don't last any longer or feel any worse, but then I do not get many infections these days. On balance, I think I do better without. My GP disagrees but my consultant accepts my decision and says "they are not for everybody". However, I am not advising you, just giving my experience. Good luck whatever you decide to do.

[Hidden]

I do similar to Aunty Mary. I have only taken steroids a couple of times. If I have an infection - coughing up green gunk etc I just take anti bio's. I only take the pred if my breathing is seriously impaired - with or without gunk. I did inform my GP of my decision to only take pred if I felt it absolutely necessary and he was fine with that. I do call and let him know when I start taking either ab's or pred, so he can always advise me otherwise if he does not concur with my decision. I think steroids are a great help and even a lifesaver for copd when really needed, but I do think they should be used judiciously. I always get pretty serious edema with them and it can take weeks to get it sorted, but I would still take them if it was really necessary.

[libbygood]

My GP advises against steroid use with abs for COPDers, but my previous GP always prescribed them even to the point of taking one a day maintenance dose which i stopped,

my hair was shedding, I felt no difference not taking that one steroid, but as parvati says I would obviously take them if really needed.

Lib x

[pollyjj]

The last time I saw my resp nurse because my breathing was quite bad, she said she could hear a rattle down my right side and asked my to take 5 days antibiotics and steroids .

I reluctantly took 30mg for 5 days, they made me feel really ill, it took me another 2/3 weeks to get rid of the side effects,so I made the decision then not to take them any more,.

I spoke to the respiratory nurse who said she had a few patients who would not take them.

I should be having an appointment with my consultant soon so I will tell him my decision and see what he says.

Thank you all for your input I know now I am not on my own.

polly xx

[Gordon57]

Big question - are they red or white ?

If they are white then please request that you're prescribed the 'enteric coated' ones, which are red. You also need to take these white ones just before food, so the food takes some of the effect away and into the gut, where it is fed into the body. The red ones are supposed to pass through the stomach.

A lot of people seems to suffer with stomach problems when they take the uncoated type. The effects can be calmed by taking something like Omeprazole or Lansoprazole an hour or so before the steroids, but that's not the answer of course.

It was the case that doctors were told to cut back, the uncoated ones were cheaper. Don't let them fob you off though. My local pharmacy lists the coated tablets for sale on their site at just £3.20 for a box of 100 !!!

weldricks.co.uk/prescriptio...

(link for information, I have no connection with this company other than being a customer for many years)

** Deltacortril verified as Prednisolone -

medicines.org.uk/emc/medici...

Another UK online service based in Leeds lists many versions:

pharmacy2u.co.uk/Prescripti...

Standard 5mg tablets seem to be 4p each yet e/c coated can be bought for 3p each !

Check with your doctor, would they do them on a private prescription if they are unwilling to give the coated ones on a NHS prescription ? Your local chemist can advise the cost. Beware of buying online, some of the products offered are animal grade.

I have a lot of trouble with the uncoated version, causing stomach ulcers in the main. The surgery have it on my record to issue coated Prednisolone when I have it prescribed.

HTH

[pollyjj in reply to Gordon57]

They are the red ones Gordon but just after a couple of days I ache all over my face swells up (moon face), I cant sleep or concentrate on anything, It feels like flu without the cold, plus other side effects, and even after a very small dose I have to cut down slowly and it takes ages to get back to normal (whatever that is).

polly xx

[Gordon57 in reply to pollyjj]

Make sure you take them before eating, and with plenty of water. Worth mentioning these side effects to the consultant as well. When I'm on them I take 8 at a time, 40Mg per day. I take my Lansoprazole in advance though.

[Hidden]

hello polly sorry your not well i have miss you and was abit worried about you sweetheart

rose xxx

[pollyjj in reply to Hidden]

Hi Rose, nice to hear from you, I am o.k. just wondered what other thought of steroids.

How is the world treating you, I have been looking at your facebook page, love the great animal pictures you put on.

polly xx

[Hidden in reply to pollyjj]

oh polly its nice to hear from you to i was abit worried when i didn't hear anything, so hearing from you has made me feel better, i'm not to bad now thanks, oh yes my animal picture, i thought thay might cheer people up and make them smile or even laugh,

rosie xx

[sillywitch]

Hi Polly I take the damn things when I get inflamation as this really upsets my breathing, i find i cry a lot when i,m taking them & as i also have ostioarthritis (sorry bout spelling!) I know the steriods makes this worse,so im going to take Gordon,s advice & try to just take the enteric coated ones & see if it makes a difference, i hope there is something out there you find that suits you. good luck

[Mmike110]

Hi, I think this could be interesting for you.....l many years ago when I first went on prednisilone, those nasty little Red Devils, I really felt so much worse when taking them, even my legs went from under me. Obviously the drs said it was all in my mind until a few years ago when I was in hospital, they wanted to give me prednisilone but as usual I refused and explained my symptoms. Anyway to cut a very long story short, after tests I found out I was actually allergic to the red colouring on the tablets not the medicine itself! Now when I need prednisilone I have the uncoated ones, yes they taste vile, but am fine with them. If you want to try the uncoated ones it has to state on the prescription they are to be uncoated ( well mine does anyway )

Obviously that's not going to be a cure for everyone who hates the feeling of prednisilone but I can't be the only one allergic to the red colouring! No other red coating on sweets or the like affect me....just thought I'd mention it!

Mike x

[Mmike110]

Ah I see Gordon has written the opposite, haha! Ah well, I have to have the uncoated ones and my pharmacy has to order these in specifically for me as they only dispense the red ones, strange how we are all different!

Mike x

[Gordon57 in reply to Mmike110]

Mike - first time I've heard of this, but thank you for mentioning it. They used to have a post-box red shiny coat but these days seem to be a darker maroon matt finish.

From the patient information leaflet:

The tablet coating contains colloidal silicon dioxide, macrogol, hydroxypropylmethylcellulose (E464), indigo carmine (E132), polyvinyl acetate phthalate, poly (vinylalcohol), ponceau 4R (E124), sodium alginate (E401), sodium hydrogen carbonate (E500), stearic acid, sunset yellow (E110), talc, titanium dioxide (E171), triethyl citrate (E1505).

I suspect an allergic reaction to one of the E numbers, most likely E110 - are you allergic to aspirin too ?

And, you're right - we are all different

[pollyjj]

Am I right in thinking they also do preds that disolve, I am sure I had these once.

polly xx

[Mmike110]

Hi Gordon, nope I'm ok with aspirin, in fact ok with just about everything! So I have no idea why I should be allergic to the coating! Hope my little ramblings help one or two of you out there anyway!

Yes Polly they still do dissolvable prednisilone thus avoiding the colour issue!

Mike x

[liz086]

Hi all . I am new to this site. The dreaded word prednisilone caught my eye. I have been on and off them for years, but may have to go back on to them daily. Its only recently that I begun to feel unwell on them. A necessary evil. While they help one illness they cause another.

Liz

[Tafweb]

Just to balance things up a bit, not everyone has problems with Prednisolone. I have used them (the white ones - 5mg) for several years now whenever I get an exacerbation and have had only good effects from them. It is important to reduce the dose gradually though as you come off them. My doctor prescribes 7 for 5 days, then 6 for 3 days, 5 for 3 days, 4 for 3 days and so on down to 1 for 3 days at the end. I guess it just shows that everyone's different!

[Gordon57 in reply to Tafweb]

> everyone's different

Which is why it's good to have these discussions. I've had Pred for many years now, the white ones always cause stomach issues for me so I get the coated ones and make sure I take them as directed. I don't have any issues with the red ones as long as I take my Lansoprazole earlier in the day.

I take 8 a day for 7 days then stop, no gradual reduction. That's how they are prescribed for me. I have them alongside antibiotics for repeated chest infections. I don't always use the steroids though. I'm on self-medication for these infections and 'know' if I should take the Pred or not. It's not always needed.

A long time ago, maybe the first time I had them, they were issued by the hospital with instructions to reduce the dose. I now have a steroid card to carry with me as I'm on the things so often.

[Gordon57 in reply to Tafweb]

I didn't realise how expensive things were getting...

I've just had an email about a FANTASTIC DEAL............a "tablet bundle" for ONLY £69! and that's with 65% off.......

Crikey, has the price of prescriptions gone up THAT much?

[Chinka]

I must say they make me feel very ill, I take the white ones, but have now refused. It took me several weeks to get over the last lot, so no more for me.

[JayKew]

I dont take steroids except at exacerbation time. then its a 5 day blast of 30mgs.

Im not sure what good it does to be honest and its the same with antibiotics.

I religiously monitor my health with my trusty oximeterand my blood sats stay remarkably static at an excellent 97/99.

Its been my pulse rate which has been problematical with steroid use.

Lying in bed of a morning its a great 69-75 and towards the end of the day it hovers between 99-110 which I guess is my hearts way of saying "thats enough for you today John".

However, Ive developed an inoperable but not fatal illness called Giant Cell Arteritus for which the only treatment is steroids

for three years

at 60 mgs a day

Been on this dose for 7 weeks now and its giving me cause for concern.

Ive been sitting down most of the day and Im just taking my oximeter now.

The results from the Brecon Jury are

Pulse 135

Sats 97

However when I climb the stairs to bed my results are

Pulse 155

Sats 78-85.

I just lie on the bed in a state of frighteningly close collapse., willing the oximeter to head towards 97 ish again.

Some nights I swear Im going to collapse because of the poor blood sats and I repeat its very, very frightening.

Docs and Consultants have always remarked how excellent my bllod sats have always been.

But this high steroid usage is having a damaging effect.

Im supposed to be off to Barcelona on wednesday for a week but now im not sure.

Its the steroids isnt it.

Theyve never had this effect on me before but there again, Ive never taken 60 mgs a day before.

John

[Hidden]

This is really interesting - My husband has just refused to take any more steroids. He is on his second course of antibiotics and steroids - started with a horrendous cold on Friday night, after the bloody chest infection of the week before! This course are red tablets (last weeks were white) and he feels dreadful with them. He can hardly hold a cup of tea with the tremors, his legs are weak and he has started with panic attacks. Perhaps he is right not to have the steroids! Interesting to hear someone write about flu symptoms, he has been complaining about that too! Anyway onwards and upwards! TAD xxx

[poeticlady]

I've been on a maintence of 40mg for well over 10yrs daily,due to my severe brittle asthma,and apart from keeping me alive, I must say I have had very bad side effects.brittle bones,thinning of hair and skin,diabetis which I take insulin for,cataracts on both eyes,was diagnoised with copd last year so cant comment on the use of them for this condition,but I do know if I could step back in time I would be very much more cautious of they use.

[Hidden]

Interesting comments. I live alone and take pred only when I need a boost to get tasks done. No choice and have to tolerate side effects. Nasty stuff. Symbicort seems to be a better option for me.