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

Had to share this with you all

Posted , 7 users are following.

Amycakes
Amycakes

Hi my friends,

I decided to drop from 23 1/2 by 1 mg, to 22 1/2 ,had 3 /4 days where I felt rough again, but decided to stick it out as it could be withdrawal rather than the return of P.M.R.

As it happens I am feeling so much better, I even managed to wash my kitchen floor today, I am so pleased with myself, how sad is that!!

I even feel like me again,though almost afraid to say so in case I jinx it all.

Next drop will be a half , as I really want to get off these steroids as soon as, but realise it is going to be a long journey.

Just wanted to share this with you, as you have all given me hope, which at one point I really felt that this is it for the rest of my life.

Your stories have been a boon to me.

I see your struggles , & realise they are mine too.together we will overcome this awful condition, & come out the other side stronger.

That is my hopes & wishes for us all.

Love Amycakes.

0 likes, 16 replies

16 Replies

Next
  • EileenH
    EileenH

    Posted

    Great - from all directions!

    xxx Eileen

  • fiftiesgirl
    fiftiesgirl

    Posted

    Amycakes that is fantastic to read!!!!! Go girl :lol:

    I have been dropping 1 mg at a time and am now on 13mg..... some stiffness and pain across shoulders and lower back a week into lower dose but okay!! This I can live with........ head up and go with the flow.... a little at a time and you will get there :D Sure not PMR but steroid reduction causing the above....

  • BettyE
    BettyE

    Posted

    Amycakes, that is great news and we all know how you feel. Scrubbed the kitchen floor! Yes, a bit of real life.

    All of us have been there and know the highs and lows.

    PLEASE don't rush it.

    I've been going down ok ish since 9 to4 in 0.5 drops. I've been on 4 for two weeks and am not comfortable but I will give it a bit longer. This can happen any time but I think more as we get lower. I shallstyay where I am and when I feel able to reduce again will go even more slowly.

    Best of luck for more real life days ahead.

  • LABRADOR_LOVER
    LABRADOR_LOVER

    Posted

    Soooo pleased for you Amycakes :P Isn't it just good to be able to do normal things. Keep going in the right direction.

    Good luck and take it easy.

    Hugs.

  • EileenH
    EileenH

    Posted

    Anyone up to washing the floor may come and visit me anytime they like - free bed on offer!!!!!!!!!!!

    And 50s girl - what a difference from a few months ago for you too. You know - I'm so chuffed that between us all we worked out that the slower you do it the better a reduction works. :D

    Eileen

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Amycakes - Wow! Isn't is amazing how something as boring as washing the kitchen floor can seem such a wonderful achievement for us PMR-ers!

    I can remember the incredible feeling when I could once again lift my arms sufficiently to wind the sun blind in and out.....and then months later I could even do it without suffering any arm pain at all.

    Well done Amycakes but do take it easy on those good days - it's all too easy to get carried away, do a bit too much and pay for it afterwards! So pleased for you.

    MrsO

  • Amycakes
    Amycakes

    Posted

    Thanks to you all for taking the trouble to answer.

    Yes a daft thing like washing the kitchen floor, sounds ridiculous but the feeling after I managed it was YES ,I did it .

    The offer of a bed, Eileen , & I'll wash your floor anytime!! On a good day anyway!

    Taking things easy today as the weather forecast says 30 degrees , so in the garden for me to soak up some sunshine & vit D.

    Spoke to my daughter in New Zealand today & she has booked her flight home on 1st Oct, am I excited or what!!

    So tie a yellow ribbon round the old oak tree, havent got an oak tree , but the one in the front garden will do, so looking out for yellow ribbons now , balloons, banners ,you name it I will try & get it.

    Life is looking up again.Just hope the euphoria will last!

    God bless you my friends & I wish you a good day too.

    Love Amycakes.

  • mrs_k
    mrs_k

    Posted

    Amycakes

    Good news and you can wash my kitchen floor any time you like.

    By the way, my Rheumy reckons, once you get to 5mg, you stay there for 3 months then drop to 4mg another three months, then 3mg and so on.

    I drop by 0.5mg as I gound the whole 1mg too much. Now on 3/2 alternate days. Was hoping to drop to 3/2/2 etc and get down to 2mg, but as usual a ten ton truck came along, so sticking with 3/2 for the present.

  • Nefret
    Nefret

    Posted

    Amycakes, I've come into this a bit late as usual, but so glad that you are feeling better!

    I've got 3 very small floors desperately in need of a wash after the wet weather..................

    Nefret

  • Amycakes
    Amycakes

    Posted

    I'll have to start a rota if I,m going to wash all these floors, so get in line please!!LOL.

    Good idea Mrs K,

    guess when I am lucky enough to get to the wonderful figure of 5mg I too shall take 3 months or whatever before trying to drop again.

    As Eileen so often says , try 1/2 mg , I shall have to buy a pill cutter soon.

    Though it looks a bit difficult to get a good 1/2 , probably mash it all up knowing me!

    The weather has been really hot today, spent time in the garden, but in the shade.

    A bit achey hip ,back area, but not too bad, have rested most of the day apart from getting lunch etc.& pressing buttons on the washing machine!

    The best thing for me has been the lack of brain fog today, or fuzzy head.

    Take care my friends & may you all have a fantastic day.

    Amycakes.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Amycakes

    Yet another good news day for your today - bet you'll start counting off the days on the calendar to October! :lol: :P

  • Amycakes
    Amycakes

    Posted

    you bet Mrs O, getting quite excited now, booking a hire car for their family, so things are starting to happen, it gives me such a boost.

    Awoke this morning still feeling ok, a few aches on times, but such an improvement, half afraid to say anything.

    Tanke care now.

    Amycakes.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Keep it up Amycakes - I'm sure this warmer and dryer weather helps. :D
  • fiftiesgirl
    fiftiesgirl

    Posted

    Lovely news about your daughter Amycakes and, as you say, something to look forward to and keep you going!!

    Glad to hear you are still feeling ok and taking it easy :D

  • Mrs_G
    Mrs_G

    Posted

    Well done Amycakes

    I hope you are continuing to feel well and having your daughters visit to look forward to will give you a real boost

    I have just come back from a holiday in Majorca so just catching up on everyones news So hope its all good !

    Mrs G

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.