reducing steroids ...... increasing side effects?

Wonkylegs
Wonkylegs Member Posts: 3,504
edited 27. Oct 2010, 17:49 in Living with Arthritis archive
HI

just wondering if anyone who has reduced their steroids over a period of time has had problems with side effects getting worse rather than better as the dose reduces?

have been on 10mg pred for 6 weeks - this week am on 10mg one day and 7.5mg the next, alternating each day, and next week I'm on 7 .5 for a week. then I go to 5mg for 2 weeks and then reduce by 1mg each week :roll: I loves a plan me :lol::lol::lol:

I am reducing them primarily because they are messing with my head, my depression and my moods. However, this week on each of the days that I have taken 7.5mg I have been really panicky, hyper, and well not that nice to know :oops: :oops: :oops:

just wondered if this is 'normal' (as if I'm every normal :roll: :oops: :lol: ) or if I should give my GP a ring. :? :? :?

thanks folks

WOnky

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have never had a problem such as you describe, so I suppose I must be thankful for that. I do wake up in a blind panic from time to time, convinced I've forgotten to do something vital but I have no idea what, or I see gaint spiders, big enough to fill the wall. That's not nice. I've never put that down to the steroids, I put it down to stress and tiredness.

    I know (scattered taught me this) that it is best to take the steroids in the morning as that mimics the body's own production of them. I have always done so, and found reducing them quite straightforward. The problem is that we are all so different in the way we react to these things. If you are worried then contact your GP. Let us know how you get on. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi wonky

    You are right to try and get off them, but your symptoms sound unsettling :?

    I'm sure they are probably totally normal, but I would be checking with my GP if I were you as suggetsed by DD. A bit of reassurance might set your mind at rest.

    Love

    Toni xx
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Wonky, I think you are dropping the dose a bit too fast. If your Rheumy will let you, a longer taper is usually better once you reach 20mg.

    I believe it is now established that the reduction overall should be no more than 10% of the total dose to give you own adrenal system time to kick in. It can be painfully slow (and boring!) but I took comfort in the fact that I was taking in less over a week than previously.

    Hope this helps.

    Annie
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Wonkylegs wrote:
    HI

    just wondering if anyone who has reduced their steroids over a period of time has had problems with side effects getting worse rather than better as the dose reduces?

    have been on 10mg pred for 6 weeks - this week am on 10mg one day and 7.5mg the next, alternating each day, and next week I'm on 7 .5 for a week. then I go to 5mg for 2 weeks and then reduce by 1mg each week :roll: I loves a plan me :lol::lol::lol:

    I am reducing them primarily because they are messing with my head, my depression and my moods. However, this week on each of the days that I have taken 7.5mg I have been really panicky, hyper, and well not that nice to know :oops: :oops: :oops:

    just wondered if this is 'normal' (as if I'm every normal :roll: :oops: :lol: ) or if I should give my GP a ring. :? :? :?

    thanks folks

    WOnky

    Hi Wonky, hadn't read this when I said something about this on my thread. Yes, I have exactly the same problems with mood swings. It could be the drop that is making those things happen because your own natural steroids have to kick in. Perhaps it means you have more in your system. I don't know. But I dropped down 2.5mg yesterday and was absolutely miserable all day. I would talk to your gp though as it may be that a much more gradual reduction of lmg every few days would suit you better. And me, for that matter but my GP is away this week.

    just wanted to say that rheumy told me to do this. I can't ring him as he is away too. Annie had said she thought that was too much of a drop but it is exactly what was recommended for me. You need to discuss it with someone medical as there might be good reasons for that dosage.
    love S
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    thanks everyone

    well I can say that I am a bit more myself today and that's a 7.5 day :D so maybe it is just a case of getting used to it.

    the steroid reduction plan is the one given to me by the consultant last week, and I got the copy letter today and that said exactly what I am doing.

    my own GP is away this week, it being half term, so I'll see how it goes for the rest of the week and then see her next week if I am struggling.

    want to be off them but don't want to rush it if slowly is best :wink: but to be off them before Christmas would be great :D:D:D

    thanks agian
    WOnky
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Glad you feel a bit more normal today Wonky :)

    Maybe you are right - you have to take it slowly and stabilize on each lowered dose?

    Let's hope so

    Love

    Toni xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Wonky :D

    sorry I missed your post yesterday...... but glad to hear that today has been better for you. :wink:

    I don't know anything about oral steroids.. never been on them... so any advice from me would be useless. :roll: :lol:

    I'm hoping that the reduction plan works, cause I know how much you want to be off these meds so that you can get started on the anti tnfs.

    Iris xxx


    ps... hope Mr Wonky was out of range the other day :lol::lol:
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi Wonkey
    sorry I have only just seen your post, I am so glad you are feeling a little better, I do hope it carries on for you.
    Not much help I'm afraid, but I just want to send you my support.
    Lots of love
    Barbara xx
    Love
    Barbara
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    To add to my earlier post. I've just spoken with the duty doctor at my practice and she says the steroids might well be influencing my mood but it wouldn't make any difference to alternate days. So maybe just the blooming drugs. I'm on Hydroxy too and mood problems are indicated with them too. Not great when if you've got issues with mood already!
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    salamander wrote:
    To add to my earlier post. I've just spoken with the duty doctor at my practice and she says the steroids might well be influencing my mood but it wouldn't make any difference to alternate days. So maybe just the blooming drugs. I'm on Hydroxy too and mood problems are indicated with them too. Not great when if you've got issues with mood already!

    exactly my problem too :x :x :x

    The steroids have done wonders for my joints (both my CRP and PV results from the bloods done last week were within normal limits :o which is rarer than hens teeth with me!) but as for the moods etc they have made things so much harder to deal with.

    For me depression and steroids are a dangerous mix, and I need out as soon as I can, but it seems it won't be easy for either of us to get off them :roll: :roll: :roll: :roll:

    Next week I'm on 7.5 every day, and if I continue to feel like I do I will be going to see my GP to see if she thinks I need to be on that dose longer before going down to 5mg which the plan says I should do the following week :? :? :?

    I'll let you know what she says. Hang in there .... at least we do know it is drug related rather than anything more sinister .... just not any easier to cope with :roll:

    hugs
    WOnky

    Ps - thanks for all the other replies too folks :wink:
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Wonky,

    Sorry I am really late to see this.... Seems like I often am now a days :oops:

    I glad its been a bit better for you today but can't help you cus the only time I was on steroid tablets it was 25 preds and though they knocked the crohns on the head within 4 weeks they also took out the muscles and made the bones hurt, not the joints the bones. After 3-4 month i am afraid i stopped taking them.... I know you shouldn't do it like that! :roll:

    When do you next get seen? Sorry you may have said but between the eyes and half a brain cell...... Love ((( )))'s and buckets of slurps Cris xx