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Hello everyone I'm new here. On steroids for flare up not sure why but side effects are terrible this time. Do others find there reaction to

Purplejane profile image
11 Replies

prednisolone different each time?

Well, lets start at the beginning shall we. I was diagnosed with late onset asthma when I was 28 (now 55) during my pregnancy with my daughter, quite common apparently. The doc's first thought was a chest infection and I had several courses of antibiotics before they tested me for asthma. I was given the usual inhalers Ventolin and a preventer (which I can't remember now!) and everything was very well controlled. In fact, after several months I stopped using both inhalers and everything seemed to be fine. I had a couple of triggers back then cat hair and pollen being the main ones. Lets skip several years, during my 30's and early 40's I had no symptoms whatsoever. I caught flu which turned in to a chest infection and then the problems started. Virus infections are now my trigger and although all URTI do not turn into an attack any with a cough element certainly do. I was given Seretide 250 which is usually good at controlling my symptoms.

I had one flare about 8 years ago when I needed steroids but had no problems with them that I can remember. At the beginning of this year I caught the 'Queens cough' which rapidly turned into an attack. 10 day course of prednisolone with a further 12 day taper and azythromycin seemed to do the trick but the pred was horrible hence the taper. Have just been given pred and clayrithromycin. 5 days of 30mgs cutting down by 5mg every 5 days after this. This seems a long taper to me. I have been having awful side affects. The insomnia is terrible about 8 hours sleep in the last 36. Every time I lay down to sleep it's as if someone is talking to me not hearing voices exactly but words going over and over in my head. I am crying constantly for no reason, agitated, rapid heart beat and still have a tight chest and a slight cough but the wheeze has gone so am not sure if it doing it's job or if the tight chest is due to anxiety? SO my question is, has any bodies experience of steroids got worse with time? They are a life saver, no doubt but my love hate relationship with them is most definitely more hate at the moment. I have only been on them for 4 days and it seems such a long way to go. Sorry for the rambling post my fingers are working over time.

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Purplejane
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11 Replies
elanaoali profile image
elanaoali

Hi PurpleJane

Know exactly how you feel. Day 19/20 of Prednisolone course after asthma flare up and two asthma attack (resolved at home) seen by A &E then referral to respiratory hot clinic two weeks ago Tuesday. On seretide 250 ( 2 puffs twice a day) and monkelaust added in two weeks ago Flixoide 250 added. Waiting for results of IgE allergy test and going back for breathing test.

Not much sleep since day one. This one has been a bad one and not been on such long course. I get hyper, insomnia and sweaty. The anxiety you are feeling isn't helping either. You need to know that you are going to be OK and these things will past. Use your asthma plan to the letter. Use Ventolin 4 puffs every 4 hours if necessary. The Ventolin will make you shake but that's it and your heart will beat faster.

I am a christian and therefore I will do what I was made to be an encourager and pray for you. I know God answers pray and I asked that he gives you peace.

Tell your friends and family how you are feeling. You have all our support here and if you need extra medical care ring 111. This can be just the reassurance you need to manage or go to be seen.

God bless

MikeWhite profile image
MikeWhite in reply to elanaoali

There are short term and long term issues with prednisolone but it’s a good drug for asthma flare ups.

Short term affects for me are insomnia so very tired in the afternoon, acne on back, chest, shoulders and top of arms and feeling emotional. Long term use has given me adrenal failure, under active thyroid, low testosterone and yesterday I was told I have steroid induced diabetes started Metformin- I was admitted to the Royal Brompton on Tuesday with a chest infection and hope to come out tomorrow - was taken off of IV hydrocortisone today and now back on 40mg of prednisolone and 32.5 of oral hydrocortisone so I’m hoping the high blood sugar is only temporary until I wean off of the prednisolone.

You just have to grin and bear it and get through it - I’m still here after all and lead a normal life for most of the year.

Take care and remember the insomnia is only short term.

Hope you feel better soon

Mike

PPxwoods profile image
PPxwoods in reply to MikeWhite

Mike

A good note

- encouraging

The only thing I got with a high dosage was the insomnia so you must take your pred before 8 am with breakfast and ask for sleeping tablets. Then it’s ok. I am on oral steroids now it has helped me considerably

Purplejane profile image
Purplejane

Wow thanks for the replies. Just been to the out of hours doc and he has put my mind at rest a little. He seemed to think that I have a high sensitivity to pred but all my stats were normal and my wheeze has gone - hurrah. My chest is still sore and I am a little breathless but on the scale of things I suppose not too bad. He suggested stopping the pred immediately but I'm not sure as I still have some symptoms and don't want to go back to square one. Not sure what to do really. I have one 30mg dose to take tomorrow and that will be 5 days. Think I will see own GP Monday and see what they say.

elanaoali profile image
elanaoali

I too am very sensitive this time for me too . I just had to put for it like you for a bit longer.I agree that going to your drs Monday is a sensible plan. I am sure if you explain your concerns to your drs about what it's done to you they will understand. Rule of thumb or gold standard asthma UK is you need to not be needing your ventolin hardy at all and all your symptoms have resolved. The sore chest is you using other chest muscle to breathe ... common enough checkout asthma UK website.... glad you are feeling better and have peace of mind.

risabel59 profile image
risabel59

I also have various reactions to pred. It can make me seriously demented, irrational, emotional and sometimes suicidal, as I am normally not depressed and reasonably sane, my husband calls them the mad pills. I also get all the usual insomnia and mania. However, I do still take the pills despite hating them because I know they have saved my life. (gallows humour here, is that an oxymoron, being life saving and making you feel suicidal at same time!!!)

Also I don't always get an extreme reaction to them, it does vary. I have talked to both my GP and consultant about this, and they take it very seriously, because obviously I am reluctant to start taking them, even though I have several courses waiting at home for me if I need them. I now have a fairly strict protocol about when to start taking them, and do now tend to start earlier rather than waiting to see if I get better. I also find if I am less ill when I start taking them I get less reaction.

My husband knows as well, and he will nag me incessantly if he thinks I should be on pred. even though it affects him as much as me, he does know its not the "real me"

Like the other responders, things that help: are taking the tabs first thing in the morning, I prefer the enteric coated ones. I also try not to stress about the insomnia, I get up, go read, bake, write etc. I also listen to podcasts, and relax even if not sleeping. I also warn everyone around me that the medicine I am taking is making me mad.

I have had 5 courses of Pred this year, (although none for the last 5 months, Yeah!!) and I only felt really awful while taking one of them. Although did have insomnia with all.

Interestingly, one of my sisters who has to also regularly use pred, loves it, she says it gives her the energy to get on and do stuff, i.e. I think she goes Manic. but there you go.

Best of luck, just remember when you stop taking it all these symptoms go away. You will be normal again very quickly.

Best

R

Katelou profile image
Katelou

Hello,

Ask your GP for Melatonin to help sleep.

It's natural and non addictive, and given in hospital to help induce sleep.

It's called Circadian 2 mg, helped me sleep whilst on steroids.

Wishing you well

Katelou

Purplejane profile image
Purplejane

Firstly, thank you all for your advice and words of wisdom. I went to the doc's on Monday and she did all the usual things sats, blood pressure etc and listened to my chest which she says is 'clear as bell' no crackles or wheeze. I am still having some symptoms slight cough and some breathlessness on real exertion but I can sing again as tested in the shower this morning! Why is it that doctors always see a wheeze as indicating a problem and if you don't have one you are ok and disregard other symptoms? I never wheezed when first diagnosed so it is not usual for me anyway. She has advised me to stop taking the pred- no taper as I had been on it for 6 days this should not cause me any symptoms. Must say I am a tad dubious as I have always had a taper before but we will see.

I am also concerned that I will stop taking the pred when all symptoms have not resolved as I know this is gold standard but she seemed to think that an residual soreness and inflamation if it still there will be kept under control by seretide- again we will see I would hate ending up at square one again having had such a bad time this time.

I'm still not sleeping partly the pred and anxiety about the meds, symptoms etc. I am hoping that a least will get better. I do suffer from thick yukky postnasal drip (sorry TMI) and I think this is doing me no favours with regards to the continued irritation of the airwaves. Does anybody else suffer and if so what do they do about it? I have tried steroid nose spray as prescribed but it didn't work so not likely to be allergy related although I didn't use it for long. What about irrigation does this work? I'm never sure if the cough comes from my throat or my chest.

I'll let you know how I get on regarding the pred and any side effects. Keep your fingers crossed.

This forum is a wonderful resource as it is so nice to know that there are people there who understand your irrational and stupid questions.

Bridin profile image
Bridin

Regards your post nasal drip I use Neil Med Sinus rinse and dymista nasal spray if required. It's important to get your sinus infection cleared and then your asthma symptoms should ease down.

PPxwoods profile image
PPxwoods

Steroids can cause all of the above effects that you described

The effects should reduce as you taper your dose

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