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Is it right to stop and start steroids?

Posted , 9 users are following.

Amanda4567
Amanda4567

I have a dilemma. I have polymyalgia which was diagnosed and treated on 1st October by my wife's UK GP (although I am resident in France). I have been taking 15 mgs of Predisolone a day since then.

The UK GP said I must on no account suddenly stop taking the Pred. But on my return to France my French GP says I must absolutely stop taking them for 2 weeks - suddenly - prior to a blood test for sugar levels, because the Pred will effect the reading. And then I should start again, depending on the reading.

I do not have diabetes, but I'm border-line.

I don't want to antagonize either doctor. I have reduced the Pred from 15mgs to 12.5 mgs per day.

Can you advise me?

0 likes, 11 replies

11 Replies

  • EileenH
    EileenH Amanda4567

    Posted

    After 5 weeks I think it is unreasonable to tell you to stop the pred cold turkey. You will experience fairly unpleasant withdrawal symptoms, the PMR will be back in force and you run the risk of making it far more difficult to get the symptoms under control again. You may even suffer an adrenal crisis if you are exposed to any stress in that 2 weeks. Even after just 5 weeks your adrenal function may be wobbly - it may not be, but he can't know. I had been on a 6 week taper - 2 weeks each of 15/10/5mg which had controlled the symptoms the entire time and that is an acceptable way of taking pred for 6 weeks and stopping. However, 6 hours after missing the first 5mg dose I was in bed, in tears and on more pain than I had been pre-pred. And that was saying something!

    Shame he doesn't know a bit more about pred and BS readings - it doesn't necessarily make a difference to random single readings and they are fairly meaningless in the context of pre-diabetes when steroid-induced. He would be better relying on your Hba1c readings which reflect the average BS over the previous 3 months. Pred MAY lead to the liver releasing random spikes of glucose into the blood - they are totally unpredictable. But that doesn't mean you are diabetic, steroid-induced diabetes is a special case. If the Hba1c level is too high you can get it better under control by cutting your carb intake. Medication if you must. But the Hba1c is a far better reflection of what is going on in terms of BS levels and the effect on the body overall.

    I do appreciate the differences between the UK and other countries - I live in Italy. But I do get better care here than in the UK. Not sure what to suggest - do you have an alternative doctor to speak to? How receptive is your current doctor to discussion?

    • EileenH
      EileenH

      Posted

      PS - how good is your French and his English? Are there going to be language problems to add to the cultural ones? Lots of cultural hurdles being ill in a foreign country!!!!!

  • ptolemy
    ptolemy Amanda4567

    Posted

    For goodness sake do not STOP pred cold turkey after being on it for several weeks. As Eileen says you could be asking for trouble, real trouble even, and you could be VERY ill. Pred requires tapering as the body cannot cope otherwise. Why should pred have any link to whether you should start taking it again or not? You have PMR which is why you are taking it in the first place.

  • Anhaga
    Anhaga Amanda4567

    Posted

    Agree you mustn't stop the pred for the reasons the others have given. How is the reduction to 12.5 going? If your symptoms are still well controlled then that's great. But I suggest that from now on 2.5 taper is too big a step, and 1 mg at a time is more likely to be successful. You really do want to avoid either steroid withdrawal pain or, even more importantly, allowing the PMR inflammation to build up again.

    Be really, really strict with yourself regarding reducing, even eliminating, carbs - carbs of any kind, even some vegetables. That may be all you need to get the blood sugar under control. It certainly worked for me. And then as your taper slowly and sensibly continues you'll get to a dose which won't significantly affect your blood sugar any more.

    • lynda62707
      lynda62707 Anhaga

      Posted

      hi Anhaga....when you're reducing 1mg at a time, is it ok to do this Everyday" or is it better to go a few days (week?) on the new dosage?

      I'm trying SO hard to stop pred. but want to be smart about it!

      thanks in advance...

    • ptolemy
      ptolemy lynda62707

      Posted

      Reducing 1mg a day is definitely not a good idea , you will not know when you have reduced too far at that speed. Most people wait a month. If you have PMR, it is not your decision when you stop the pred, it is in the hands of the PMR unfortunately and it may have different plans to yours!

    • lynda62707
      lynda62707 ptolemy

      Posted

      alright then, am currently on 13mg so would you suggest I stay there at least till my next Reuhmatologist appt next week?

    • EileenH
      EileenH lynda62707

      Posted

      "I'm trying SO hard to stop pred. but want to be smart about it!"

      Lynda - if you have PMR and want pain relief you NEED pred. And you will need pred for the foreseeable future. I would say there is nothing smart about stopping pred if you have PMR - but that is my personal opinion.

      If you have decided you would prefer to deal with without pred and take the risks that entails, then you can probably reduce the pred dose by a 1mg or so per week and stop if you haven't felt unwell on the way down. Except of course for the PMR symptoms. They will be back.

    • Anhaga
      Anhaga lynda62707

      Posted

      If you mean 1 mg , then another mg the next day, and so on down, NO! But if you mean 1 mg then stay at the lower dose for a certain length of time, then a qualified YES. For example, and remember we are all different, I was able to taper by 1 mg per week (after being at 15 for about 5 weeks to begin) until I got to 10. Nine mg was a step too far. After I restabilised at 10 mg I started using the dead slow nearly stop taper plan which takes about four to six weeks to taper each step. At first I did 1 mg a month, eventually I slowed down to .5 mg in five or six weeks, with a longer break between tapers. Now I'm not successfully tapering at all as I'm apparently at my lowest best dose, usually around 2 but seem to be needing a little bit more just now probably because of stress.

      And always remember what Eileen says, "It isn't slow if it works". The lower the dose the slower you should taper. I think above 10 or 15 if Breakfast9, for example, is able to lower the dosage without steroid withdrawal symptoms then that does mean getting to a lower dose a bit more quickly. But the appearance of any symptoms, even at that slightly higher level, means the taper should be slowed down. Also some people need more pred than others for effective symptom control as like everything else, we metabolize pred more or less efficiently, more quickly or more slowly, etc....

  • Susanne_M_UK
    Susanne_M_UK Amanda4567

    Posted

    I had the hba1c test and it showed pre-diabetes. I managed to lose a lot of weight by following the Low GI diet, (glycemic index which measures sugar in foods ).

    • Amanda4567
      Amanda4567 Susanne_M_UK

      Posted

      Thanks Susanne, I wish my husband had the same will-power as you. It was him I was writing about.

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