Lucia is waiting with a light at the end of the tunnel
Posted , 10 users are following.
To-day is the Lucia Day in Sweden. She comes with lights in her hair and in her hand. She enlightens us in the darkest period of the year with light and songs. This morning, Ragnar came and woke my wife up with the Lucia song and while drinking morning coffee we watched the TV programme with traditional and new Lucia songs. We both thought back at celebration of Lucia when we went to school and when the children celebrated Lucia. If you are interested to find out more you can google Lucia in Sweden and also find songs on Youtube.
On December 13 in 2008, I got off pred after 3 ½ years of pmr and GCA. I had found out a new way of tapering slower than before and finally got off pred. I chose to say that I did it on December 13 - the Lucia Day in Sweden, because it is easy to remember and it also is a positive day. For us who have or have had pmr and/or GCA it is nice to know that Lucia is there with a light at the end of the tunnel.
On August 16 – my 79th birthday – I made a presentation in Chertsey, Surrey for the NE Support group about my story about the Ragnar method to taper pred. It was very nice to meet so many that I had just read about on the forum. Some are also on this forum.
At last, I wish you all a Merry Christmas and a Happy New Year
7 likes, 22 replies
jean39702 RD_Swede
Posted
What a lovely post Ragnar. Thank you for sharing the traditions of Sweden.
Wishing you and yours the Merriest of Christmases and all the best is maintaining freedom from PMR in 2017 and beyond.
And thank you for your contributions in helping so many of us manage prednisone reductions.
Jean 🤶🎄
How wonderful, I got to thank you twice.😄😘
linda17563 RD_Swede
Posted
constance.de RD_Swede
Posted
Happy Lucia Day Ragnar and wish you many more in the future.
Thank you for your kind thoughts and that you don't forget us, even though you are a Club Zero member.
Christmas greetings to you and your family. 🌲🍾🍸
Constance.de
whitefishbay RD_Swede
Posted
I met you in Chertsey and enjoyed your talk. You make PMR look easy.
I went to a Swedish Christmas Market at the Swedish Church in London. Lovely people in traditional dress drinking glogg! Happy St Lucia Day.
Michele
Susanne_M_UK RD_Swede
Posted
Hi Ragnar
I know the lovely Sankta Lucia song very well (being Danish), it's a beautiful song. I'm sure your wife loved your rendition!
Have a very Happy Christmas.
Susanne
rrobinson75 RD_Swede
Posted
EileenH rrobinson75
Posted
Ragnar's method is the forerunner of the dead slow approach, just he used his version only below 5mg originally. The dead slow approach is probably even slower than Ragnar did his.
If you have pain half way through the dead slow method it is likely you have reached the point we all look for: the lowest dose that manages your symptoms. It doesn't matter what you try - once you reach that dose any attempt to get lower will only result in a return of symptoms. You won't get lower until the activity of the underlying autoimmune disorder falls off so that there are less inflammatory substances to cause inflammation.
If you are at 7mg after 14 months you really don't have much to worry about. i have been on pred for over 7 years, for at least half that time at above 10mg. I have no long term problems - I gained weight and have lost it all again, no diabetes, no cataracts, bone density barely changed (with only calcium and vitD), no raised eye pressures. There are plenty of others with few such problems after 2 or 3 years. 7mg is a low dose, about the same as the body makes daily anyway and which is needed for life, so most doctors are not particulalry worried once you get to there. You will get lower - just not yet.
RD_Swede rrobinson75
Posted
rrobinson75 EileenH
Posted
When would you suggest that I try to reduce again? Thank you again. Roberta
rrobinson75 RD_Swede
Posted
whitefishbay rrobinson75
Posted
I always say this is the most common disease no one's ever heard of. If you talk about it you will hear 'oh I know so & so has it'. I am so grateful for all the experts & fellow suffers on this forum. Literally a lifeline.
Hang in there.
rrobinson75 whitefishbay
Posted
EileenH rrobinson75
Posted
The usual advice is to wait a couple of months and then try a 1/2mg reduction with the slow approach. Wait for a month or so. If it works, you can try another 1/2mg. If it doesn't you don't waste time, you go back to where you were OK. Rinse and repeat. Eventually that 1/2mg drop will work, you can stay there for a month, try again. If you notice increasing fatigue or niggles, wait a bit longer until you feel well, try again.
No-one can say when, how long, how long it will take for the fatigue to improve, everyone is different. All you can do is try again carefully and not try to force things.
RD_Swede Tinaj
Posted
I think your time for geting to Zero is the shortest I have heard about. I just hope you stay at Zero. I have been at Zero for 8 years but stayed a year on 5 mg due to fatigue befogenheter tapering to Zero.
On the Nice En forum I started Club Zero and maybe we should have one here too. Then I wish you welcome as member!
Happy holiday and good luck at Club Zero. We have some other ones that should also become members and they should post and make an announcement about joining Club Zero.
EileenH RD_Swede
Posted
There is thought to be one version of PMR that is similar to reactive arthritis - it happens in response to a trigger such as an infection but then resolves quite quickly, often as little as 6 months.
Remember, PMR isn't the disease, it is the symptoms we experience of an underlying disease process. Once that disease process stops, so do the symptoms. The trouble is, you can't tell which version a patient has from the symptoms alone - so either you decide to ride it out or you take pred in the meantime and reduce steadily as far as you can. I tried the riding it out approach for 5 years (not by choice) and after over 7 years of pred my cause of PMR appears to still be there.
But whatever sort - it's always good when it goes away!!!!!
RD_Swede Tinaj
Posted
We don´t have an "official" Club Zero on this forum, but I think that those who are off pred just mention this and become a member. I think it is very nice for those struggling to know that there is an end to it!
EileenH RD_Swede
Posted
There has been a thread for people achieving zero pred for some time:
https://patient.info/forums/discuss/zero-prednisone-discussion-450915
Anhaga rrobinson75
Posted
I have to confirm Eileen's approach as this is how I've been tackling the reduction. Try 1/2 mg using dead slow reduction. If it doesn't work the last good level will only be 1/2 mg away. It took me two tries to get from 3 to 2.5, but have been at 2.5 for several weeks now and am going to try kicking the tires of 2 mg just to see how it goes.
Tinaj RD_Swede
Posted
Hey RD, Thanks so much! There definitely is an end!! I've got my life back!!! Yippee!!
Happy Holidays! 🎄🍾🎶
Janet
Tinaj EileenH
Posted
Hey Rileen, Thanks so much for the link to the zero club!!! You are are truly a wealth of information!!!
Happy Holidays! 🎄🍾🎶
Janet