Lucia came to-day with lights in her hair

Posted , 9 users are following.

On December 13, 2008 I stopped taking pred and have had no flares since. The reason I chose to say I stopped on December 13 is that it is a date easy to remember as we celebrate Lucia, the queen of light. I was at the end of the tunnel and Lucia was waiting for me with her lights! So there is a light at the end of the tunnel also for you!

I was lucky not having a bad pain all the time. It took me 3 ½ years to reach the end, and especially  at 5 mg I had to wait for a year due to fatigue. After waiting that year I found out a tapering method with one day new dose, two days old dose and repeted this, and after a week I took just the new dose. I tapered 0.5 mg at a time. Slowly does it. After many had tried this method, especially ElaineH has improved the method for those who still cannot taper without pain by lengthening the period before going over. This can of course be done in many ways but you can follow the ElaineH scheme that she has written on this forum many times.

When I started to follow this forum in 2005, there was not very much information other than what the doctors gave you – and that wasn´t very much. I am glad that this forum has helped so many during the years. On the Northeast forum, we have a Club Zero for those who have come to the end of tapering pred and reached 0. I think it is very valuable that also those who are off pred still continue – at least once in a while like me – in order to encourage those who are fighting to reduce and are in pain. Besides me I can mention some in this forum that also belong to Club Zero – MrsK and Mrs O for instance.

Keep on fighting but very slowly!

If you want to get more information about celebrating Lucia in Sweden, look at https://sweden.se/culture-traditions/lucia/    

From a German friend I received a paper clipping many years ago. Som funny looking persons in white dress wearing what looked like a cross but was a star on a pole. The police in the USA thought it was members of Ku Klux Klan but were released after an explanation about celebrating Lucia.

Every year, the Nobel prize laureates spend about a week in Stockholm and they usually stay over the Lucia day. It was told some years ago that a very old Nobel laureate thought he was in heaven and saw angels when the Lucia and attendants woke him up with singing the traditional songs. Those who stay in Stockholm for that day are celebrated with a Lucia and attendants

Ragnar 

2 likes, 11 replies

11 Replies

  • Posted

    Thank you for the encouragement Ragnar - as a 'newbie' having only been on preds for 6 months I too have found the advice and encouragement most helpful.  My new motto is 'slowly but surely we will make it!'
  • Posted

    Happy Lucia Day and No pred Day Ragnar!

    Ragnar has been an inspiration for a lot of us with PMR - and as newcomers can see, he still takes an interest in the forums. 

    Happy Christmas Ragnar!

    EileenH

  • Posted

    Hello Ragnar, may I send  you all best 'Cornish' wishes for your Lucia celebrations. Have a wonderful time.

    thank you so much for 'popping' back to this site and wishing us all well with our recoveries. As you say many of us are following Eileen's slowly but surely method of reduction in some way or another, and we all hope to get to zero in the end. However, if I get even someway there and remain in the 'nearly zero' club I'll be more than happy. Just out of interest how is recovery and medication to this condition approached in Sweden? I have read that sweden and its neighbouring countries experience the highest levels of sufferers of this condition. 

    Please do keep popping back to speak with us all, I can't tell you how much of a smile you have put on my face knowing that there is light at the end of the tunnel, even if that tunnel is presently quite along way away.

    have a great Christmas and all best wishes for the New Year. Regards, christina

  • Posted

    Happy Saint Lucia Day!!

    So glad you are feeling well and that you posted such an encouraging message to us, who are not there yet. Knowing your success is a gift of hope.

    Thank you.

  • Posted

    Happy Anniversary Ragnar!  Thank you so much for your uplifting message.
  • Posted

    Many thanks RD, your words are indeed very encouraging to us all that remain in thr "non-zero" club at the moment. I hope that you had a splendid :Lucia day, may we all see the light at the end of the tunnel very soon.
  • Posted

    Hello again Ragnar and happy St Lucia Day.  I enjoyed reading about the Lucia tradition, and It's so good that you still pop in from time to time to offer encouragement to others still struggling.

    Well remembered about me having joined Club Zero.  Who knows, without meeting you here some years ago and hearing how you 'discovered' the slowly slowly tapering method to get below 5mgs and to zero Pred, I might still have been sitting at 5mg!  I had to do it even more slowly than you, but I will always be eternally grateful that you took the trouble to post your 'discovery' and your success story.

    Stay well, Ragnar, and my very best wishes to you and your family for a very happy Christmas.

    And very happy Christmas wishes to everyone else 'looking in' - may those of you still battling soon spot that light at the end of the tunnel.  

    • Posted

      Happy Christmas to you, Mrs O.  and many thanks for giving kind advise at times when we all are in need of help.  The remnder of slow tapering is so important and to be taking very serious, as I have found myself to have rushed the process.  I am  always looking in for guidance while having empathy for the ones who suffer more.  Erika

       

  • Posted

    LO Ragnar. First of all a massive Thank You to you & all the other pioneers[girls] who took the time to start these FORUMS. With info from these forums I & I am sure a lot of other folk have made good progress on this strange journy. I wish you all well & Thank You.Dave
  • Posted

    I have flewn up to Stavanger, Norway and I haven´t been looking at the forum for some days. Thank you for all your comments and greetings.

    Christina asked about the level of pmr and GCA patients in Sweden. There are 2000 new patients a year and we have about 9 million inhabitants. I don´t know of many persons tht have pmr and/or GCA, so I don´t know if it is more frequent in Scandinavia than in UK. I am not envolved in what happens about medicines etc that you asked but I think it is the same situation as in the UK but as far as I remember, we couldn´t get 1 mg tablets the last year (2008) so I had to cut 2.5 mg tablets into 4 parts for the slow tapering.

    I am not so active posting things as it is now six years since I came to zero. I am glad that some of the oldies still comment. I feel I am too far away for most questions. So much has happened during the past years and for instance ElaineH developed my tapering method so it is easier to follow for those who need longer tapering periods. I was also one of the lucky ones with little pain compared to most of you. I hope you will all make a good progress next year - but slowly does it!

    Talking about pain - after a bypass operation in my right leg (had popliteal aneurysm = aneurysm under a knee) I have had much pain in my foot that was almost dead before the operation due to too little blood circulation. As I have atrial fibrillation and thus have to take Warfarin (bloodthinning medicine) I cannot take medicines like diclofenac but I have a new visit with my doctor in a week. 

    Merry Christmas and a Happy New Year to all

    Ragnar

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