Remission ?

Posted , 7 users are following.

Hi,

Thank you to all who replied and advised last week.

I felt I we going backwards, having reduced steroids from 15-9mg from May, only to have to increase to 30 for five days due to chest infection.

I resumed 9mg and to my amazement no side effects fatigue or pain.

Brain fog and despair days seem to have disappeared, which although I am pleased about, especially as I am looking after my daughter and 3 year-old granddaughter.

My question is, could this be remission, although I was diagnosed in May, I had been ill for 18 mths prior, my blood tests are all normal and that why diagnosis took so long.

Could this horrible condition have burned out, or am I being delusional.

0 likes, 15 replies

15 Replies

  • Posted

    Hi, I'm sorry I don't have an answer to your question, although I really hope it is the case for you and you are through the other side of this horrible illness. Please mind yourself tho and don't fall into a false sense of security especially as you're looking after your daughter and grand daughter, you don't want tonsetnyourselfnupnfor a flare/relapse. Hope all continues to go well for you and please mind yourself.

    • Posted

      *to set yourself up. Sorry, not checking before posting!!
    • Posted

      Hi,

      Many thanks for you're reply and kind wishes.

      Here's hoping this improvement continues, without a crashing down to come.

      Hope you are well.

  • Posted

    I think you need the experts on here to advise but your blood tests will probably be normal because of the steroids. It may be that you can manage at a lower level but it may be prudent to follow the DSNS programme for reducing further. It is good that you have managed to continue on 9mgs with the extra stress you have at present. I hope your daughter is making good progress and that you are enjoying looking after your granddaughter. 
    • Posted

      Hi,

      Many thanks for you're reply and kind wishes.

      One day at a time as they say.

      Hope you are well.

    • Posted

      Hi,

      Many thanks for you're reply and kind wishes.

      It's all go, and thankfully so far so good.

      Hope you are well.

    • Posted

      What is the DSNS program?

      Hope you feel better and that this goes into remission for you.

    • Posted

      I'm sorry but my iPad is playing up. I wrote the whole DSNS programme and it disappeared. There is s link that someone more computer literate than I am will be able to give you.

  • Posted

    maybe wishful thinking .... though wouldn't it be nice! smile

    there was mention a couple of weeks ago of a doctor with pmr who took a higher dose for a while then a low dose or none if I read it correctly. I was left wondering if the high dose reduced inflammation to a very low level that then took some time to come back and be noticeable.

    But I don't know of course.

    • Posted

      Hi,

      .apologies for the late response, internet rubbish.

      Interesting that the Dr had a higher then lower dose.

      I have to say, (very quietly) feel so much better and different, so glad, really don't know how I would have got through this week otherwise.

      One day at a time, so hope I don't crash with a big bump, quite like feeling normal, well as much as I can being me.

      Hope you are well.

    • Posted

      I remember reading that.  My thought at the time was - she has had to take that high dose a number of times.  Does not look like a very efficient use of pred.  Not to my mind anyway.  I'd rather get my dose down to the smallest level which works and just hang out there, flare-free!

  • Posted

    I hate to say this, but you are on 9 mg.  If it is the dose which manages all your symptoms of course you will feel great.  But the proof of the pudding is in the eating.  If you can continue a very slow taper (dead slow as recommended) with neither steroid withdrawal or PMR recurrence, and reach zero pred and be there for a while, then perhaps you will be able to say PMR is in remission.  Above 7 mg pred your adrenal glands are on holiday.  You will need to wean very slowly even if PMR is gone (and I do hope it is) so that your body produces enough of its own cortisol to keep you feeling well.  Pred should give you normal blood results.  Some people with PMR never have raised blood markers.  
    • Posted

      Hi,

      Many thanks for you're reply and wise words.

      I was taking 9mg for two weeks before I had to increase to 30, and didn't feel good, fatigue, etc.

      Having taken the 30 for five days, and reducing straight back to 9 mg, I can only say the difference is amazing, not been a slug with brain fog this week, thank goodness.

      Hope you are well.

    • Posted

      I am well, thank you.  But I started with 15 mg pred last June (2015) and am now, August 2016, at 3 mg.  Sure I still have PMR but am still slowly reducing to the lowest dose which will control the symptoms. smile 

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