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Return of side effects

Posted , 5 users are following.

Kittylitter
Kittylitter

Hello everyone, I wonder if you can help? Just a small thing really but I'm finding it a bit odd. I've been diagnosed and taking pred for 18 months, probably had it for about 4 months prior to diagnosis. I'm currently at 5mg and tapering by 0.5mg using the excellent DSNS method. Have had some ups and downs but so far so good. I found that from about 6 mg most of the steroid side effects stopped, brain fog, extreme fatigue, and I lost most of the weight I hade gained. I took my first 4.5mg dose 2 days ago and have really felt an impact. I've gained pounds in days and am bloated again. Feeling sluggish and irritable. I am also menopausal and realise that that may have an impact on mood etc. My question is, is it common tho reduce so little and feel such a big impact? Feel like I'm going a bit crazy. Thanks for reading.

0 likes, 8 replies

8 Replies

  • tavidu
    tavidu Kittylitter

    Posted

    Hi kittylitter. When you think about it 0.5mg is 10% if you are on 5mg, I would consider staying on 5 for a few more weeks and let your body get use to it before dropping. They do say that it can take 12 months or more to get down from 10mg to where you are now due to the adrenals . I have had PMR for 3.5 years and have just managed to get down to 10mg.
    • Kittylitter
      Kittylitter tavidu

      Posted

      Thanks for responding Tavidu. I do feel lucky that I have managed successfully to get to 5mg in 18 months. I'm in no rush to get off pred, I'm more interested in being PMR symptom free (or nearly free). I'm going to hold out at 5mg for a while. Good luck with your PMR journey.

  • Anniecurd
    Anniecurd Kittylitter

    Posted

    Hello Kittylitter, I have been on a quarter mg for about a month. A couple of times I tried to go down to zero and a week later would feel tired and slightly achey. So this week instead of trying to stop altogether, I will take the pill on alternate days and see if that works. So I think the answer is yes, such a little reduction can have an impact.
    • Kittylitter
      Kittylitter Anniecurd

      Posted

      Thanks for your reply. I wish you luck with your reduction. It is a very finely calibrated business.
  • EileenH
    EileenH Kittylitter

    Posted

    Half a mg can make a big difference. If I were you I'd stop this reduction, wait a few weeks and try again. It all depends how your body is coping with the removal of the pred in terms of adrenal, hypothalamic and pituitary function. It isn't JUST your adrenal glands, a lot more is involved. 

    • Kittylitter
      Kittylitter EileenH

      Posted

      Thanks Eileen - sound advice as always. It's difficult to know the difference between steroid withdrawal and increasing PMR symptoms sometimes. I always feel off balance for a while when starting to lower the dose but these symptoms felt more like the side effects I suffered when first starting pred. As you do right you say, it's a number of factors in combination. Thanks for taking time to reply.

    • EileenH
      EileenH Kittylitter

      Posted

      Do use the Dead Slow reduction we bang on about here? It challenges your body with the new dose one day at a time and pretty much eliminates steroid withdrawal discomfort. But steroid withdrawal starts immediately you change the dose and improves over the following week or so. Returning PMR usually takes a few days to appear and then steadily gets worse. And the smaller the reduction step the better to make the distinction too.
    • Kittylitter
      Kittylitter EileenH

      Posted

      Yes, I do use the DSNS method and it has been brilliant so far. I've found that I feel awful when I first start the new dose but I feel better over time. I've been fortunate enough only to suffer 1 flare at 11 mg when PMR symptoms increased again. I'm not sure if I'm maybe just feeling unwell, I seem to have an allergy that comes up every now and again- causes itching and redness in my face. And I have had a run of eye infections which my GP suggests is due to my poor immune system. Perhaps now is not the time to attempt the next step in reducing even if my PMR symptoms are not increasing at the drop. I guess I was hopeful (despite all the sound advice through this forum!) that the illness would have disappeared sooner, especially when taking a lower dose. Hard not to be impatient sometimes.

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