Im now off steroids week 1

As many of you know ive been back and forth to gp and consultant since xmas. Im now on first week without my maintenance abs and steroids . I have had these infections before but this years by far the worst todate and ive got the most awful feeling of heaviness and crushing this time which ive not had before. If i over do things even slightly the feeling increases and i get pain in my left lung in my back. It was the worst yesterday after id been out for lunch with my friend .....seems worse since not on any meds. Anyone else have or had this? Im not due to see consultant till 8th April (he wanted to see me off all meds) so im not sure what to do been in all day today just incase. Thanks Judith xx

35 Replies

  • Hi Judith its difficult isnt it,steroids mask our aches and hurties which is why we feel better aswell as lessening any inflamation in our lungs.You know you Judith if your concerned another infection is rearing its ugly head then you will need to go back on meds again.Your cons may well want to see you not on meds but ill is ill eh?If you do have a further infection then maybe postpone appt for another week or so? Take it easy youve been on steroids now a while so your immune system will have been knocked alittle so you need to be extra careful with them blimming bugs and germies make everyone who enters wear a bag on head lol,I joke but you will find it easier to catch the nasty blighters because your already low does that make sense.I do hope its not an infection! :) Janexx

  • Sounds like your adrenal glands. I had the same problem when I came off the steroids last year. I was told that when you are taking steroids your adrenal glands shuts downs and it take a while for your glands to restart when you stop taking the steroids. I had pains in the bottom of my back and I felt very tired for weeks. Hope this helps but if you are not sure see your doctor.

  • Evening Judith I am sorry that you are not well. I would advise go to your doctor to get this checked out or ring the consultant tomorrow. Perhaps the BLF helpline could help? Hope you start to feel better soon TAD xx

  • Thank you xxx i just feel heavy and really sore im definitely more breathless . I dont think its infection brewing but i will see how i am tomorrow and if still the same will make appointment to see my gp on friday as shes not in tomorrow. Its so difficult im now thinking is this how im going to feel from now on? Thank you for your replies i will let you know how things go xxxxx Judith xxxx

  • hi judith, so sorry to here you are unwell,as you know we were both in the same boat as far as steroids are concerned,we were going to keep a check on each other, as we both came off them approx the same time. unfortunately after a few of weeks without them, and a "weaning off " process i have succumbed to a nasty infection. i hope this is not the case with you.

    i have to say, i had the same feelings as you, in the days before this infection. i should say, take the advice above, and get an appoint asap, i left it for days, i found this was a mistake as i am paying for this now.,,,,,, jane, sunny day and tad have given sound advice, please get this checked out asap, i certainly hope this is not an infection, but if left, may turn into one , it maybe that another lesser course or weaning off from steroids might be the answer, but only your g,p, will be able to tell you that, i really do hope you feel better, at the moment i am struggling to breath,, i have written this quickly as my carer has just come in,,, i do wish you well, keep us posted judeth,, , i have exactly the same feelings as you!!,, kindest regards, thinking of you,, jimmy

  • Thank you Jimmy x im waiting for dr to ring me. Im sorry you arent so good especially when you too were off the steroids. This chest malarky is awful isnt it x i did reply to you but im not sure you got it (to be honest im not good at the technology stuff if you message me we can keep up to speed that way) ill let you know what dr says. You take care of yourself love and hugs Judith xxxxxx

  • I had been on them for 3 years, on average 6 or 8 5mg tablets a day, and was blowing up like a balloon, that's when the consultant stopped them. The first withdraw was while I was in hospital, I had tried several times to stop them before and each time an infection would start up and the GP's would up the dose again.

    This time the consultant said I would be in for a rough couple of weeks, it felt like I had the flu and 'man flu' at that, it caused pains and discomfort and felt like I had a bad infection. It took weeks for the ill effects to go. We have progressively reduced the dose and am now down to 3mg a day with a note on my medical docs 'don't give steroids'. The good thing is I have of course had a couple of infections since, but the antibiotics seem to work better and quicker and my lungs feel a lot clearer. If you look up steroid withdrawl it does say the body may mimic the illness the steroids were being taken to help.

    Good luck it's not easy but worth it.

  • Thanks moneal ...ive been on off them for last five winters butnot had any problems like this before mind ive never had infection as bad as this before!

  • Hi Judith - It might be worth ringing the helpline, I am sure they will have dealt with steroid withdrawal symptoms and maybe able to advise is your symptoms are typical or not? Hope you feel a bit better today. TAD xx

  • Thanks TAD i had day in yesterday slept better so ill see how i go today but yes will do if im the same. Judith xxxx

  • Don't get dragged into that hopeless feeling of "is this it"

    I always have that thing about this is how I am going to be from now on and somehow I have always bounced back to fairly reasonable state, managing to live quite well. I think it goes with the disease this down mood. It will pass don't worry.

  • Thank you true its probs because ive not been as bad before so expected to be back up and running like last times. X

  • Hi Judith, I don't take extra steroids but when I have that crushed chest feeling I will just ring docs for an emergency appt to have someone listen to my chest for signs of lung infection. Takes the less than 5 minutes and really puts my mind at rest if it's totally clear.

    Do as Tad says, ring BLF they may advise some method of overcoming those feelings/symptoms. ..... Hoping all's well xxxx P....... Judith ;)

  • Thanks peeg i will ring the surgery see what they say. I dont feel unwell as such just odd in chest no cough or anything but ill ring just to be sure xx thanks for caring xxxx j

  • Tigershay

    I've had the same problem since Sept 13. Was rushed in with an exacerbation ended up on NIV due to type 2 respiratory failure.this lead to a pseudomonas infection. I've been on prednisolone since. 30 mg a day till Feb 14 plus 1500mg of ciprofloxacin a day till pseudomonas cleared up. I'm now on a weaning off process. Feb was 25mg a day. March April are going to be 20mg. May 15mg. June 10mg. He wants me down to 7.5 a day. I've had a couple of infections since where back to 30mg a day then 5 days after of reducing to that months dose. My biggest help has been a maintaince dose of 100mg doxycycline per day. Apparently the adrenal gland produces 5mg of cortisone a day and stops when prednisolone is taken for any length of time hence the weaning off process.

    Sorry for war and peace

    Hope you feel better soon


  • Thanks Dave oh dear thats awful to hear. Ive been on 30mg per day snce dec couple different antibiotics in between then the doxy same as you. I was then reduced down to 10mg steroids and 100g doxy . The chest consultant told me to reduce steroids down till i was off them. This is my first weekwith nothing as he told me to stop the doxy immediately (2 weeks ago now) i dont see him till 8 th april but if like this its going to be painful and uncomfortable . Im waiting for dr to ring me so see what she says. Judith xx

  • I'm also weaning of Prednisolone, think I was on 5mg at first now down to 2mg, I'm reaching the stage when I know what G.P. will prescribe me!

  • Ive just been prescribed 2mg as gp thinks ive come off them too quick !!! X

  • Hope you are feeling betterx

  • Hi yes feel bit better ....dr later but just precaution i dontfeel infection is brewing . Wishing you well and have good weekend the sun is supposedly returning xxx judith x

  • Hi Judith, So sorry you're still not feeling well. You have had such a rough time of it these past months. Lots of good advice above that I could hardly improve upon. Like a few of the others every time I try to cut down steroids I'm okay for a few days and then I get so breathless I have to up them again. Can only say I hope your doctor comes up with something positive for you, poor gal. Meanwhile, plenty of rest & TLC for you. Sara xxx

  • Thank you Sara. Ive spoken to my gp and same as you im breathless after stopping so shes put me back on 2mg steroids for couple weeks xxxxxx judith xxx

  • i had a chest infection and still today have a cramp like pain in my left side it drives me mad and also wakes me up I can't sleep on my left side

  • Same here i cant sleep on my front or fold my arms as so painful how odd!!! Im seeing dr tomorrow to be checked over xxx

  • i would be interested in what your GP thinks it is good luck I hope all goes well for you.xx

  • Im interested myself haha will let you know xx

  • Hi, tigershay1, I have had the same as yourself,painful chest,especially after any exsertion,the uncomfortable feeling that goes up my neck down my arms,lower lung pain,like there is a weight in it,I'm tired all the time,no energy,everything is a effort,I have been off an on steroids,and A/B since December,still on A/B,see a consultant at Bath,R.U.H,next Monday,I have read through some of your replys,many have mentioned about the side effects of taken steroids,they make an awful lot of sense, I thought it was just Me !, my doctor did not phase the steroids down,just stop them,was taken 30mg a day, you sound like you have had a really rough time,I do hope you will be feeling better soon,take care,xx

  • Interesting ...theres a lot of people having similar pains. I hope your appointment goes ok for you take care and thank you for kind words judith xxxxx

  • Hi tigershay1, I take prednisolone, of varying doses. Sometimes they are a necessary evil. I have lupus with some lung involvement. If I stop the pred, then I am plagued with a massive flare of symptoms. I also get very chesty and find it hard work to breath. For my personal situation, I can never come off the steroids, and now need 3 monthly, depo medrone,(steroid ), injections. If you can go back and re-wean yourself ever so slowly, you will benefit in the long run. It's a bit like antibiotics. Try and save them for bigger emergencies, or like me, you will just keep needing higher doses all the time. Wish you better.

  • Thank you 6161 i also have rheumatoid arthritis but after four steroid injections and the meds thats settled just this pesky chest to sort. Wishing you well xxxxx

  • I came off steroids at the beginning of 2013. I had a month of aches and pains, general joint stiffness etc but its clamed right down. You may just have to give it a bit of time.


  • hi dudeth,, it looks like theres a few who have experienced, or are experiencing , the same basic symptoms as us ,,i was so proud of the last weaning off the steroids, and the antibiotics just a few weeks ago,, only to be hit by another "cracker" infection,,back on the second wean down week after an 8 a day week [down to 6 this morning] and another 5 days amox,, i feel terrible,ill,no better,and disappointed [as right now] for a few hours,,, then hopefully slightly pick up as the day goes on,, cant even think straight atthe moment,, but interested in this thread,, same as the immunity thread,, hope you feel better judith,,jimmy xxx

  • Oh Jimmy thars not good as you had done so well. I had to go back on steroids but only on very small dose. Hopefully you will feel better soon and be able to reduce right down but you might have to stay on small dose to keep you ticking along. Get plenty rest and keep warm until you feel bit better ....we are all here if you need some chat xxxxx love Judith xxx

  • hi judeth, youve had and got a hard enough time of it to be worrying about me, but i really do thank you for doing so.. i am slightly better this evening. and as you say, by , i think next monday i will be down to 2 tabs then stop, if i need a very small maintenance dose after that ,so be it., , i hope your aches pains etc subside and you feel a lot better, , im doing exactly as you say, a little exercise, plenty of rest, and keeping myself warm ,, thanks for the lovely post,, sincerest regards,,, jimmy xxx

  • Ah Jimmy its no trouble for me at all dont worry about that. Im pleased you are so positive about it as youve had a rough time its awful when just as you think all is getting better bang it hits you again. Still no good getting down its just wasting energy which canbe better used getting well. Hope you get a good nights rest my friend catch you in the morning night night love Judith xxx

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