Yet Another Problem

annie_mial Member Posts: 5,614
edited 9. May 2010, 15:41 in Living with Arthritis archive
Following a rather fraught week when I was admitted to hospital immediately from a routine Rheumy appointment, I have now been diagnosed with a very nasty reaction to steroids (Prednisolone).

As I have been on Pred for some 8 years in varying dosages this came as a shock to me. I had been getting very unusual symptoms for some weeks after having a severe chest infection in early January when I had to increase the Pred to 30mg daily (not the first time that has happened by any means for various reasons). I had such a struggle to lower the dose following that episode and was becoming increasingly unwell each time I tried - it seemed to start everything else off. (I have 9 medical conditions, most of them autoimmune).

The answer to it of course, is to wean off the Pred whatever happens........which probably means I am in for a rather painful summer. I could also have done very well without this cropping up just now as we are due to move house in 3 weeks time.

Luckily, I have a very supportive family; although we are a small unit now, we are there for each other.

I need also to say that both my GP and the consultant have been brilliant. The hospital rather let both of them down when my medical records appeared to have been changed/amended/just plain messed up (on being transferred to another ward) with the result that I missed a day's doses of the thing I need most just now - steroids!

I was already very stressed and very, very tired before that happened due to the conditions in the ward I had been transferred to and it was the last straw.....I wanted to discharge myself and said so. Luckily my consultant was actually in the hospital at the time and she was - well, furious is an understatement!

As all the test results in at that point had come back negative (there are still one or two to come in) I am now self treating at home with the blessing of the consultant and I am seeing her again next Friday. I really don't know what the final outcome and decision on treatment will be until then and it is very unfortunate that we are leaving the area so soon. The future looks a bit uncertain from where I am now.

But.........I am home, I am very relieved to be home and I am carrying out my side of the bargain to the letter! The weather is beautiful and seems set to stay that way for a few days, so I am very cheerful today.

I will update this with the result of next Friday's appointment - unless, of course, I am kidnapped and held hostage by the hospital again!



  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Annie, you poorly girl. I too love my steroids, they provide almost immediate relief, beautiful little pills. I started them in February 07 having had a very bad time on enbrel and meth for my PA. They were the only meds I was allowed for three months, starting at 20mg per day, reducing to 5. Until recently I was on between 15 and 7.5 per day, until last week. I suddenly caught sight of the backs of my legs in a mirror - 27 separate bruises, all varying shades and sizes. Bruising and a bigger appetite have been my side effects of note but that level of bruising was horrific. I've gone cold turkey, yes, I know, I shouldn't, and I feel lousy, but the hospital keep telling me they want me off them, so that's what I'm doing. The dark arts of rheumatology deserve a Hogwarts course of their own! Why is it that the things that work are always so bad for you, re: cream cakes, chocolate, alcohol, smoking, full English breakfasts, clotted cream etc. The auto immune system is the body's equivalent of an ASBO bearing hoodie. Surly, uncommunicative, rude, invasive, disrespectful of its host and deeply unpleasant to know. Take care, I hope things improve, and keep in touch with us all. I'm new, but I find this site very encouraging and supportive. Regards, Dreamdaisy.
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Annie,

    Oh flower what a bad time you have had. A ((( ))) for you and well I am glad your home cus our rescue plan was about to swing into full operation and since we were to be ordered to out places by Little Legs.......

    Its is bad timing with the move but Annie it would have been when ever it had happened and at least this is under your log standing consultants. Are you moving too far to still see them (I'm sorry if you have said Annie my eyes aren't so good just now).

    As I told you I had a very bad reaction to preds from only 25 and for only;t three months so I got some idea how bad you might feel. Its so hard to balance all the conditions and I so hope they will find a better way forward for you and you don't get as bad a summer as your thinking.

    Hey I did vowed never to go on preds again but the last 2 nights and I am stating to raid draws looking for some :wink: You rest up, take good care of your self and I really hope it all sorts out for you soon. Anther ((( ))) Cris xx
  • speedalong
    speedalong Member Posts: 3,300
    edited 30. Nov -1, 00:00
    Hi Annie sounds like you have had a dreadful ordeal. Being admitted to hospital as an emergency is always a nightmare - but all the cock-ups and the transfer sound terrible. What a stroke of luck your consultant was on the premises at the time.

    Enjoy the lovely weather, catch up on your rest and good luck for appointment on Friday.

    Hopefully your consultant will have you all sorted before the move - and your new doc can just pick up from where you left off. Can your present consultant recommend a new one in your new area?

  • frogmorton
    frogmorton Member Posts: 28,505
    edited 30. Nov -1, 00:00
    HI Annie

    You ahve had an awful time :shock: I am so sorry :(

    You should have rung me - i ahve escaped from those places three times - just ran away!!! Hate em!!!

    I think sometimes you are far better at home and far better looked after. I do hope they are able to get to the bottom of it - or if there is no bottom that you can get off the pred when you try.

    I hope that the move will be straighforward and am glad you ahve such a good family to support you. Mione is small but good too :)

    Please take care and let us know how you are doing we will be with you to support.


    Toni xx

    (who is also very u;ppbeat due to the weather)
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Hi Annie
    What a time of it you've had and I'm sorry you've had to go through all of that and still have difficulties to face with coming off the pred.

    Sounds like you have a great rheummy....... as other peeps have said I hope you are able to travel ((if a reasonable distance) to see her once you have moved home? I've not changed rheummy after moving home last year and now travel by train to see them! I've been attending same rheummys for feels as though it would be too much of a wrench as they know me so well.

    Family are a blessing and it is just so good that you have their help with the house move...will be thinking about you as you get organised for that particular will have to be the supervisor!!

    you will feel exhausted after your experience in hospital so be kind to yourself and let your family support and look after you.

    It's great to see you posting again Annie...we were all worried when you went awol. :wink:

    Iris x
  • angel1
    angel1 Bots Posts: 1,464
    edited 30. Nov -1, 00:00
    Annie, my lovely friend, what a brave girl you are. We all worried so much when we hadn`t heard from you.

    From all that you have said, you are treating this latest setback, in your own inimitable way. In other words......."You won`t beat me".

    Carry on the way you are at present, asking for, and accepting the help of your lovely family. Be kind to yourself, take lots of "soft" time. As you and I have told each other before, use baby steps for now. If things start to get on top of you, please talk to someone.

    You are a strong, brave lady, and I wish you all the love and happiness in the world, in your new home.......Much love......Ange.
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    So sorry to hear about your recent/current problems. Good job your consultant was around!

    I am finding this thread very interesting as I didn't know much about prednisolone reactions .. (have managed to avoid it so far but my dad was on it for years for chronic obstuctive airways disease)..

    Hope you have had a good day in the sunshine and are taking things easy..

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi annie we are here when you need us we do hope things do not get that bad but will be here for you. sorry the hospital ran true to form some of ours like that but at least you are home safe and sound it did give us a scare loosing you like that know trisher was missing you and very worried about you glad you escaped and managing at home enjoy the sun but do not over do things
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -1, 00:00
    Hi Annie, we so pleased to have you back with us, we were getting worry.
    So pleased you can recover at home,i sometimes think you do get better in your own surroundings & the noise in hossie is horrid.
    I have escaped too like Toni(my cyber sis) & once did it in a wheelchair & PJs :lol: but they soon caught up with me & dragged me back kicking & screaming then i got my parents to discharge me,.not my fav place.
    luv n healing hugs to you & hope you get your meds sorted. debs
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00

    So sorry to see this and how scarey to be admitted in that way. Just glad your consultant was there to sort things out when you needed it most.
    Take care of yourself, glad to see you are resting and following doctors orders. We really did panic when you went AWOL as knew you would have been in touch if you could.
    I really hope you are feeling a little better before the move, I know you had prepared as much as you could but it is still a big step.
    Hang in there.
    Chris xx
  • mummyb
    mummyb Member Posts: 1,231
    edited 30. Nov -1, 00:00
    So sorry to hear you're having such a rough time at the mo, here are some hugs hope they help a bit (((((()))))) Brenda :):):):)
  • bertyboy
    bertyboy Member Posts: 1,860
    edited 30. Nov -1, 00:00
    hi Annie sorry you have are having a bad time of things but hoping they get you and the meds sorted real soon . hugs and thoughts for a better outcome xxxxxxx
  • frogmorton
    frogmorton Member Posts: 28,505
    edited 30. Nov -1, 00:00
    [& the noise in hossie is horrid.
    I have escaped too like Toni(my cyber sis) & once did it in a wheelchair & PJs :lol: but they soon caught up with me & dragged me back kicking & screaming then i got my parents to discharge me,.not my fav place.
    luv n healing hugs to you & hope you get your meds sorted. debs[/quote]

    Oh Debs!!

    I been in me jammies and Mr Blobby slippers once too!!!

    We will set up an 'escape committee' eh??

    Toni xx
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    I'm overwhelmed!

    Thanks to each and every one of you for your support, it's been great to read them.

    I am doing all I can to keep things on an even keel even if it does mean annoying the neighbours (on thinking about that, especially if it annoys the neighbours - they are pains in the neck).

    I have to make a return visit to the hospital on Friday, but I am well prepared........I'm going in armed to the teeth!

    Thanks to you all again.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Good luck for Friday sweetie. Let us know how you get on. Regards, Dreamdaisy
  • frogmorton
    frogmorton Member Posts: 28,505
    edited 30. Nov -1, 00:00
    Ok Annie

    Riot sheilds at the ready

    Us lot will be right behind you!!!

    What time do you need us??

    Toni xx
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Annie, So glad your back home. Lets hope your Consultant can come up with some answers to the withdrawral prob.

    You have had a real rollercoaster year so far. I hope the move is as easy as possible. Good to know your family are with you. Good luck on Friday. Ix
  • oneday
    oneday Member Posts: 1,434
    edited 30. Nov -1, 00:00
    take care and take it easy....if you follow their advice i think being at home will be more restful and help you recover quicker.....
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    I'm sorry you'r having a bad time at the moment and it must have been so frustrating, when the hospital mucked up with the notes! :? e

    I'm glad that you have a good family and doctors to support you, that should make all the difference for you! :wink:

    Lots of Get Well wishes, love Sue
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Annie

    only just catching up with this thread as have been away for a couple of nights.

    littlelegs says that you just need to shout and she will be there with everyone at battle stations ..... the plans are all there and well rehearsed!

    if any naughty doctors need barking at she has cris's lot to help out, and maybe a few calves in reserve should they be needed.

    there's also a special cow-pat hurling machine should the need get so great :shock: but I truly hope you don't need that :lol::lol::lol::lol:

    loads of hugs my love - you are coping with so much and yet you keep us all smiling. Don't let them ignore you on Friday!!!
    wonky xxxx
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Annie,

    All the best from me and the Forum Team too.

  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    hi Annie, haven't said much on here lately but just wanted to say good luck with everything (hospital, move etc.) Seems as if you have had a rough time lately. I hope the withdrawal goes well. I have problems withdrawing and have to reduce lmg every two weeks but am getting there!
    Sally xx
  • angell1954
    angell1954 Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Annie , have just read about yr " trip " to the hospital , i hope everything goes well with your next appointment

    lots of angell hugs :)
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Hi, Angell, thanks for the good wishes. All seems to be going well at the moment, Pred is down to 12.5 from 20mg so hopefully Rheumy will be pleased next week!

  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    oh annie so sorry you are so poorly. what an ordeal you have had take it easy now.Its good the consultant was in hospital and sorted things out for you. hOPE U GET BETTER SOON from joanne