been on steroids off and on for about a year now , some very heavy doses,,, now some side effects showing,,,anyway after taking a "funny turn" [take lots of them :) :) ] a few weeks ago, and after stopping the last ones 8 a day for about 6 weeks my g.p put me on a "drop down programme" i am pleased to say, i am now on two a day now, from the 12th to the 15th, then one a day from the 16th to the 20th,, the the 21st,,STOP:: so, will see how things go then, but ok up to now.

they are marvelous things for recovery, but, as i have learned, "not to be messed about with" best regards to all,,, ,, jimmy :) [who said i look like prince charles:).....look more like his son lol :) :)

30 Replies

  • My husband has always taken them with antibiotics but the last course - he had to stop taking he started having serious side effects including a few funny turns. You are right - fantastic drugs but need respect! Oh and you definitely look like Prince William!!! Take care TAD xx

  • yes tadow, your bang on there, i am just keeping an eye on myself now [if thats possible :)] but i had the doc. dropp them slightly quicker than she wanted to, but off course with her say so,, but ok up to now, touch wood,, my head lol:)

    prince william ha ha,, :) more like prince naseem,, the boxer :) just after he was beaten :),, but thanks anyway,, all the best tads,, jimmy xxx

  • I know where you are coming from Jimmy. I too have been on steroids for something like seven years now.

    For a while it was a high dosage because at the time I was being treated for Cancer, even now after six year or so I am still taking two a day.

    I think I have reached the stage where I no longer worry anymore, as I mentioned in an earlier post I can no longer distinguish the difference between illness or old age.

    Each day comes and I chalk up another success until evening comes and I think to myself,'Gosh, where did the day go?' and before you know it we're off again.

    Deep inside I know that my Emphysema is getting worse and I am completely dependent on oxygen but what a life!

    Dull days I have my memories. Spring brings birds and flowers followed by warmth, blue skies and above all sunshine. Cue there for a song methinks. [img][/img]

  • hi eighty plus,,,yes we often have bad days, and off course it gets you down, it happens to us all though, i often feel like that, especially "gosh, where did that day go" and when you hit the low spots, theres always something that can cheer you up, even if its funny old memories,:) at least the youngsters havent got that:) having a chat with a friend or neighbor,,, a laugh about things we used to do:).. its rotten to be dependent on anything, but think of some of those young folks, lives ruined, dependent on drugs,, terrible really.,,,,,,,,,,, but were now well into march, spring is well on its way, the bulbs are nearly flowering now,, you can see all the signs now, the birds singing,trying to find nesting spots, the blinken grass growing now :) worse luck:) it wont be long before we can sit out side,hopefully on a warm summers evening, just breathing in the fresh air, even with the oxygen., its lovely to dream on,, and the best of it is,, its free, we can dream what we want to dream , lets wish for a lovely summer :)

    "when the sun shines in, face it with a grin, smilers never loose, and frowners never win" nearly burst in to that old song their:), you look after yourself,, keep in touch,, all the very best indeed,, kind regards jimmy:)

  • Good to hear your coming off them . I saw my consultant yesterday as ive been on maintenance of 10mg day im reducing down till on none. They arent good for us but then again we neex them sometimes to exist ....take care judith x

  • hi judith yes we do need them at times, in fact they can save your life really,, but ooooh thees some side effects, but when you think of it,, a small price to pay, my doctor was going to keep me on a 5mg maintenance dose, but i really wanted off them, so we will see how things go take care likewise judith ,,,, jimmy xx

  • True Jimmy take care we can compare posts on how we are getting on without them Judith xxx

  • yes judith exactly that, great idea,, at the moment, i am finding that i am producing more mucus, very difficult to get this up in the morning,wheesing a bit. its got me exhausted before i start:).. but i am expecting a prescription of carbocisteine [acetylcystien], wish they would make these words smaller lol:),, this is supposed to break this phlem or mucus up, but i dont know if this has anything to do with the drop in steroids,, i stopped smoking about a month ago, maybe more [approx] and i am told this can happen after stopping smoking, so will try this carbocistein first, but im ok really, certainly a lot better than i was,,, but, yes, keep me posted judth,, it,ll be interesting,, take care now,,,jimmy xxx

  • hi tigershay,, since stopping them, i have been bothered with phlegm mucus, very difficult to shift,,,maybe nothing to do with the steroids, but just wondered if you had that bother, i have just been prescribed carbocisteine, so i will see if this shifts it,,, but keep me posted judith on how things are with yourself,, regards :) jimmy

  • Hi Jimmy ...oh not nice at all. Ive noticed im coughing more but nothing like you ....could be the steroids keep our inflamation down so cough less now without we cough more. It maybe we might have to stay on maintenace dose. See how you go with new meds . Take care catch you soon Judith xxx

  • i wonder if that could be the case judeth,? i have the feeling you could be right,,,,the doctor did say, before she lowered them, i might need a low maintenance dose, however i will try these carbo,s and see how things go,,but will keep you posted,, take care,,,jimmy xxx

  • Yes could well be. Im back at gp on tues so will see what she says but im on 5mg till end next week . Have a good weekend Judith xxx

  • we will keep

    track of things,i cant remembr the day i finished them, think it was about wednesday, i am ok up to now, so we will see what your doc says on tuesday,, jimmy xx

    p,s see my next post judeth, think i have boobed!!! jimmy

  • No Jimmy Prince Charles looks much older than you it must be the steroids I only look 18 with the amount I took, keep smiling Jimmy. x

  • :) :) :) great post onamission.. wonder if bonnie prince charlie [no offence if your looking in at this prince charles,,,... sir:)...] gets free prescriptions with the national health:),,? maybe botex , who knows:) ,, think its me that needs the botex :) lol,,, keep smiling ,, kind regards,,,jimmy,,, [prince:), but you can just call me jimmy...but . james on a sunday:) ] ha ha xx thanks onamission:)

  • p,s its a good job no one can see the small print at what my girlfriend is saying,,, i forgot about that,,,,,,jimmy:)

  • - Hi , what I would like to know is = Do Steroids in them selves make you put weight on , OR do they make you feel more hungry , thus you eat more and therefore you put more weight on ? - WHICH IS IT FOLKS ??? ! ...

  • vittorio,,,,,they make me feel hungry,,,,, at least that parts not bad, as i am not really a big eater :)

  • I would say the Steroid itself puts weight on last year i was on 80mgs a day and within 3 months i was 15 stone up from 13 and i was not eating much most of the time it was the pain that stopped me from eating, i have a combo of IPF and RA so Steroids are part of my meds I am now down to 10mgs a day I am managing to lose three or four pounds a week but thats down to a lot of excersising.Mattcass

  • I have been on sreriods for 35 years non stop my lowest dose used to be 10mgms. But the last 2 years i cant get any lower than 25mmgms. ...i have all the side sffects including osteoporosis ,no immunesystem.glaucoma. and all the other little bits.and bobs. ......but i am alive. Seee my kids get married and have 2 grandkids. And i know i wouldnt be without steroids. So take with care. But they can save your life .....sue. x

  • yes that,s the worst of steroids, i know my eyes are really bad, really need eye test, waiting on a dexa scan for osteoporosis, which i am a nap to have as i have ankylosing spondulitis, and as you say, all the other bits and bobs, but they have probably saved my life.

    but i have now been weaned off them now , so i will see how i go,:)

  • ..Thanks folks ! - it seem its a bit of a balancing act where taking Steroids are concerned ! ....

  • yes vittorio, yes i think you right,,jimmy

  • its just dawned on me,, i thought my steroids were to finished on wednesday,?,, the packets were empty then!!!?, the doc put exactly the right amount in them,,[i still have my emergency supply] so i must have went wrong somewhere along the line,, this is the 14th i should be taking 2 from the 12th until the 16th,, then 1 from the 17th until the 20th,, then stop,,i have boobed somewhere along the line.. i dont know how i managed that,, but stopped wednesday,, i think,,possibly tuesday,,,, so many tablets im getting all mixed up ,, i cant imagine the doc putting the wrong amount in, shes always bang on, i cant find the leaflet she left or me with all the dates and numbers to take, i think i threw it out with the empty packets,, thats if they were empty!!!! ooooh i have def. boobed there,, well i am off them now anyway,,, but need to be more careful in future,, but i am still confused as to this happening, i am posting this but really thinking out aloud to myself. that will bug me now all night now,,,, jimmy,,

  • for tigershay1,, let me know how you get on at docs tomorrow, re. the steroids,, i am off them completely now,,,kinda accidental:) as you will see in the post above,, all the very best anyway judith,, regards jimmy xx

  • Hi Jimmy how are you getting on ? Ive had the Alpha1 test done at gp and signed off work till after Easter now . Im off the steroids from today so will see how things go. Hope youre enjoying the sunshine ..catch up soon love Judith x x

  • hi judith, hope things carry on like that , x

    unfortunitly, i had to phone nhs 24 this morning, [new this was coming for a few days] they heard my breathing, wanted to send ambulance, i refused, then they sent doctor,she called, said she would phone ambulance, told her i didnt want that,she said it was my choice, back on 8 steroids and ampox, my own doctor to call tomorrow,, not good news im afraid,, feel lousy,,,jimmy xxx

  • Ah Jimmy thats not good bless you .....It just shows how quick things become bad. Mind i can understand you not wanting to go in to hospital more germs in their !! I hope you feel well again soon . Keep warm and drink lots and watch daytime telly. Let me know how youre doing . Take good care love and hugs Judith xxxxxx

  • Hi jimmy,I do hope you feel better soon,and that the meds work quickly for you,do understand reasons for not wanting to go in hospital,xxx

  • thanks judith and puff for the understanding, because i got it from most folks today,," you should have went to hospital when they said", i know their well meaning, but ive been in and out umpteen times, it does get you down a bit, and really these folks havent a clue, i mean that in the best sense,, but sometimes enough is enough, i just came out 4 weeks ago,,, anyway, still feeling lousy,, breathing slightly better, but got the blinken cold as well, im just disappointed after coming off steroids and anti-biotics,, just to be back on the band wagon again, anyway we fight back before, we fight back again,,,kind regards,,jimmy xxxxx

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