Lucia brings light in the darkness

Posted , 5 users are following.

Exactly three years ago (on the Lucia Day, December 13) I got off pred and have been free from pmr. I chose the Lucia Day to say when I got off pred as it is easy to remember. This year I think about Lucia bringing light in the darkness and let Lucia bring you light and hope that there is an end in the dark tunnel of pmr.

If you want to read about the Lucia Day, visit http://en.wikipedia.org/wiki/Saint_Lucy%27s_Day

Some month ago I visited a meeting in Gateshead with the support group there. I spoke about my way of reducing steroids when you reach a low dosage. I am happy that my method seems to help many persons. Let´s hope for a brighter 2012.

Ragnar

1 like, 9 replies

9 Replies

  • Posted

    Ah ha -I assume Ragnar sent us a link for Santa Lucia whose saint's day it is today. I do hope the moderators let us have it back!

    Children in the Scandinavian countries celebrate Santa Lucia by wearing crowns with candles on and it is a great honour to be chosen. She brings light in the depths of the northern winter.

    That is about the sum of my knowledge - is this the beginning of your 12 days of Christmas Ragnar? Something suggests to me you have yours before Christmas whilst the rest of us have them after.

    Anyway - Happy Christmas whenever!

    Eileen

    • Posted

      Yes. We celebrate Christmas on Christnas Eve. It´s then that Santa Claus comes. A fairly old tradition is to watch Disney short movies at 3 PM don TV on Christmas Eve. I think many families make a break then and start to eat after those movies. There is also a new TV clip from the latest Disney film but most of them are classics.

  • Posted

    Eileen. You are quite right. Lucia is 11 days before Christmas Eve when we celebrate Christmas. This time we will be going to Stavanger, Norway and it will be nice to see the difference - Christmas food seems to be one difference. I had a link to Wikipedia Saint Lucy's Day. If you google those four words you will get the link I attached. If you wait you will also see the message in my post.

    The Nobel prize winners usually stay over Lucia and are awakened by a Lucia with lit candles in her hair and attendants. They sing the Lucia song. It was said several years ago that a Nobel prize winner that was fairly old (I guess most of them are) thought he was in heaven and that the angels were singing for him.

    Another story I got from a German friend who sent a newspaper clipping with a Lucia and attendants (what we call star boys). The boys were wearing white caps (like cones) and had a bar with a star in front of them. They were arrested by the German police as the thought they belonged to Ku Klux Clan

    Ragnar

  • Posted

    Ragnar

    So lovely to see you posting again and that one year has gone so quickly.

    I am fine and doing much more than I could. Do so hope you and your Mrs decide to visit the UK again. You will have a room here.

    Healthy 2012.

  • Posted

    Hi Ragnar & all,

    My children all went to a multi-cultural primary school and participated in the celebration of \"Santa Lucia\". The girls all had their garlands and usually the tallest girl got the honour of being \"Lucia\", which ruled my daughter out as she was the smallest in her year !!

    It was always a lovely time of the year as all the children enjoyed learning everyone elses customs and traditions, and I can still recall the song, if not all the words.

    love to all,

    Pauline.

  • Posted

    New to this site but not new to pmr. Would like to hear your way of coping with low dosage and then coming off altogether. I started at 13mg of prednisone about 2 years ago and am now on 2mg even days ad 1mg

    odd days. Trying 1mg per day now but pain in the morning. Thanks for any advice. Creaky

  • Posted

    Hi Creaky!

    When you are at such a low dose, it is very important to go very slow. If you google pmrgca northeast and look at Our stories, you will find my story = Ragnar (Sweden) where I tell how I tapered. You can even make it slower by adding one or two days before going over to the lower dose. As you see, I cut the pills so I got 0.5 - 0.6 mg.

    Good luck Ragnar

  • Posted

    Hi creaky and welcome!

    At any dose a reduction shouldn't be more than 10% of the current dose - and to go from where you are at alternating 2 and 1mg to 1mg every day is about 33%. So Ragnar's advice is worth taking into consideration.

    But beware, another lady one here was in a similar position to you back before Christmas. She can only take the enteric coated tablets and they cannot be cut so she had reduced by taking 2.5mg pills on fewer and fewer days a week. She had got to somewhere in the region of 2.5mg per week - one pill on one day a week or so. At that level you would think it was a minimal effect but when she went lower - within a short time she had a flare and had to go back to 5mg (can't remember if that is every day) and then tried to drop back to her previous dose which is often possible after a flare but it didn't work.

    I can't remember the name of the thread but it is one of the ones at the top so go and have a look. If I were on your dose I would be quite happy there - especially if taking less hurts.

    EileenH

  • Posted

    Thanks Ragnar. Iwill reduce more slowly. Good advice. I think I just wanted to get out of the regime but I

    see I must be patient. Not my strong point. A love/hate relationship with prednisone. So effective but also can be very damaging. Regards, Creaky

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