1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Effects of steroids

Posted , 14 users are following.

Gone_Girl
Gone_Girl

Can anybody tell me what the unpleasant side effects I can expect from use of pred steroid medication?

Am down to 11mg a day and am so concerned have been taking for two months and can't see how I could be free of them altogether.

What are your experiences?

2 likes, 58 replies

58 Replies

Next
  • Oregonjohn-UK
    Oregonjohn-UK Gone_Girl

    Posted

    Most of the side effects are listed on the data sheet that comes with every pack of tabs.

     

  • Oregonjohn-UK
    Oregonjohn-UK Gone_Girl

    Posted

    You have to learn to live with the preds - treat them as a friend!  If you are down to 10 mg I would take it slow.  When did you start, was kit only 2 months ago?
  • gillian_25383
    gillian_25383 Gone_Girl

    Posted

    I got steroid hump i.e. fat deposition between shoulder blades,excessive weight gain,round face including loss of any discernible neck plus increased bruising.These were the worst side effects in four courses forPMR .After 7 months had to come off mainly due to weight gain as I had a heart attack last year.Am back under the rheumatologist who has just started me on methotrexate instead.Has said if this does not work (it can take up to 14wks to do so)there are other options but did not specify.If you have PMR expect to be on atleast9mths tapering 1mg a month and if need to increase at times they say up to 2years

  • Nefret
    Nefret Gone_Girl

    Posted

    There are a fair few side effects listed for Prednisolone.  No-one gets all of them and some get none.

    They disperse as the dose is reduced and by the time you get to 6/7mg there are usually none left as that is dose your own body would make naturally.  This is also often the main sticking point as you are beginning to ask your adrenal system to wake up and help, but in many cases it has got used to being lazy and is reluctant to do so.  Some rheumatologists do mark this by getting their patients to stay on these low doses for some months, and it does seem to help.

    There is, as yet, no cure for PMR and steroids are simply managing the symptoms to allow you to lead a reasonably 'normal' life until it packs it's bags/goes into remission/burns out.

    Hopefully yours will be a textbook recovery but don't be lured into reducing them too quickly.  It's a recipe for disaster.

     

  • pauline36422
    pauline36422 Gone_Girl

    Posted

    hi gone girl  i am pleased to say i didnt get any side effects at all  so i guess i was lucky. i am down to 2  mg   now  with just a few nigly pains  but trying  my hardest not go up another 1.  so goog luck with your reduction
  • ptolemy
    ptolemy Gone_Girl

    Posted

    I got the side effects pretty soon after I started pred, about fourteen of them,  if you have not had any yet, you may be lucky and not get any at all. As you reduce, the side effects normally get less anyway. Just don't reduce too fast.
  • paul45653
    paul45653 Gone_Girl

    Posted

    I have been on pred 15 months, and see new side effects all the time. My list keeps growing with no effects leaving. Some can be ignored such as Purpura, the dark red spots on arms and.legs. others are disturbing such as severe hand tremor. I'n short be prepared for a long haul and don't rush the reduction or you will only make it last longer.

    Paul

    • ptolemy
      ptolemy paul45653

      Posted

      Paul with your purpura, do you find that they split open? In my case some do and the rest are just under the skin. I sometimes look as if I have been in a fight with an unfriendly cat. They take just under three weeks to fade. Mine just appear from nowhere it seems. 
    • lodgerUK_NE
      lodgerUK_NE paul45653

      Posted

      Paul and ptolemy

      You may both find that Double Base Gel, which can be prescribed by your GP will help your skin.  I was told about it by MrsO and it worked.

      If you cannot get it on prescription then you cany buy it OTC at Boots for £11.50 for 500mg.

      Oh and don't shower more that two or three times a week, each time you shower you strip your natural oils out.

    • ptolemy
      ptolemy lodgerUK_NE

      Posted

      Double Base seems to be the only thing that is any good. It is not a good idea to use moisturisers I have found. I am trying to find what triggers new purpura. I swam a length in the swimming pool the other day and some new ones had appeared! People must think there is something wrong with me studying my arms every few lengths! 
    • lodgerUK_NE
      lodgerUK_NE ptolemy

      Posted

      Short answer seems to be because your immune system is compromised.
    • constance.de
      constance.de ptolemy

      Posted

      Ptolemy & Paul.  Do try the Double Base Gel, I too got the info from Mrs O, it worked a treat (after 3 or  4 applications).  Certainly worth the money.

      Also, as lodger says don't bath or shower too often, and when you do, don't use soap or foams, just scrub with a flannel then you won't lose those valuable natural oils.

    • Oregonjohn-UK
      Oregonjohn-UK lodgerUK_NE

      Posted

      Or cheaper on the well known website!  Worked great for me was very supprised that it was not sticky and leaving a foul smell - quite pleasent
    • ptolemy
      ptolemy lodgerUK_NE

      Posted

      I think you misunderstood me! I was wondering if there was any event such as scratching myself thst would make it suddenly appear. In fact my vascular surgeon explained the reason why it hapens in the first place in great detail. It was quite complicated!
    • paul45653
      paul45653 ptolemy

      Posted

      Hello ptolemy,

      My spots just remain flat and as yours they take about two weeks to fade while others are taking their place. Some of them are due to light bruising or scratching an area but its hard to know which. The worst part about them is the effect on people around you or the percieved effect. I had been playing tennis with a group of seniors and hope to go back, but they must think I have come down with something catchy and I found that no one knows about PMR and it gets old having to go through the whole story. 

      Paul

    • ptolemy
      ptolemy paul45653

      Posted

      Hi Paul

      I know what you mean about what people think. Sometimes they look like I have been pruning the roses and hope that is what people think I have been doing. I had a little group of purpura last week that looked like I had a rather nasty graze by my elbow. People kept asking if I had hurt myself. I check each day to see which are new and which are old and number them in the sequence they appear.  I think I may be losing my mind! 

    • constance.de
      constance.de ptolemy

      Posted

      There are far more things that could make you lose your mind than purpura. (hee hee)!  When I had it at the beginning of PMR I had great blotches of it, often two inches wide, and yes, they bled.  Had to use special bandages that weren't to be removed for a week at a time.  No swimming, showering or bathing for weeks. (Thank God for the flannel)!!

       

    • ptolemy
      ptolemy constance.de

      Posted

      Hi Constance, Mine vary in size enormously. From tiny dot ones and then larger ones, I don't think I have gone over an inch though. Although I did have a fairly large one on my leg recently, luckily it did not burst. They often come in clusters.  A real pain, or should I say a painless pain! What dosage were you on when you stopped having it?
    • constance.de
      constance.de ptolemy

      Posted

      Oooooh!  I don't know, it was a long time ago.  I think they cleared up in about six months, but I have kept getting little ones over the years (I have 2 at the moment, but only small ones, about 1/4in round.  There are massage jets in my local swimming pool and I do love them, but they pound the skin -not good!!
    • ptolemy
      ptolemy constance.de

      Posted

      Ah that is interesting. Your swimmng pool sounds much more exciting than the one I go to.  
    • constance.de
      constance.de ptolemy

      Posted

      It is.  It has a hot tub, a whirl pool, two inside pools, two outside pools, a wave machine, a swirl length that pulls you along (very strenuous!), and all for 5€ (about £3.50) for two hours.  Oh, and it also has a sauna, which also has an outside pool and magnificent rest rooms, but that costs more (17€).

      Jealous?

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.