Help with tapering
Posted , 12 users are following.
I am appealing to anyone who has been lucky enough to wean completely off Prednisone, for, at least, a while.
i am currently on 1/2 mg, for almost 1 month.
i am considering dropping to 1/4 mg, instead of stopping suddenly, and enduring unwanted consequences
i am not the same person I was, prior to PMR.
i don't have a lot of energy, andcan't paticpate in the sports Ive always loved.
I am unstable, now. I don't walk a straight line, unless I focus, whereas before, it was natural.
Has anyone else experienced that?
However, am not in any PMR pain, that I experienced initially.
i'm sure part of this lack of energy,slowed movement and motivation, is induced, in part, by age(74). Sarcoidosis (an auto immune disease), and lymphoma. Could PMR also help to create this change?
i am anxious to take one of these nasty illnesses, off the list, and the others are incurable.
it would make me feel that I have a little bit a lof control over my life.
any input would be appreciated.
i can't rely on doctors. They don't always know the answers. I would rather get my responses from those who have suffered with this illness, and are willing to share and suggest. I have so much more trust in your knowledge.
i don't know how I would have gotten this far, without all of you.
thanks
barb
4 likes, 30 replies
teenyjeeny barb30898
Posted
debbie27473 barb30898
Posted
tina-uk_cwall debbie27473
Posted
Debbie, I'm from just over the border in cornwall, and I like you miss all the long rambling walks that we used to do just over a year ago, but hopefully that day will return and luckily at 53 I am still quite nimble even if I can't go the whole distance yet. Christina
barb30898 tina-uk_cwall
Posted
thanks so much to you and all the others, for the positive thoughts.
to answer your question, I began feeling symptoms, almost a year ago.
none of the local doc's were willing or able to diagnose me, and the symptoms were so bad, within a month, I could no longer walk.
once diagnosed and treated, with 20 mg. pred.the pain was gone, within a half hour.
as you can tell, I've tapered at a rate inconsistent with Eileen's prolonged method.
it was a taper suggested by my rheumy, and before I became desperate , and found this site.
i'm probably very lucky ( at least, so far) to have done so well.
i am appalled at how little the local doc' s know, and at how much, many of this group suffer.
tina-uk_cwall barb30898
Posted
i am so happy for you that you are almost there, the finishing post I mean. I wish you all the best. Regards, Christina
barb30898 tina-uk_cwall
Posted
the numbers that have PMR, in GB, is quite high.
i wonder what the number is, in the US?
i'd actually never heard of PMR, before I got it, and
It still amazes me, how much pain the human body can tolerate and deal with.
wishing you well.
barb
barb30898 debbie27473
Posted
how long have you been with the beast?
tina-uk_cwall barb30898
Posted
barb30898 debbie27473
Posted
I am reading your sage advice, and will heed and follow.
i have always been someone who can't sit still.
i played a high level of volleyball, in school.
then got into running.
at retirement, I evolved to golf, tennis, and pickleball.
i am going to have to work very hard, and at a slow rate, to be able to play a minimal game.
It's important to push through all of this, so you can again, enjoy some, if not most, of the activities that gave you pleasure, and share them with the ones you love.( I think that was a run on sentence)
i won't give up, and am wishing the same to you.
i know, with perseverence, determination ( and a bit of luck)
we shall prevail.
Barb
EileenH tina-uk_cwall
Posted
And whilst GCA is a rare disease overall, it is the most common large vessel vasculitis in older patients.
paula63201 barb30898
Posted
EileenH paula63201
Posted
Are you sure that figure is for PMR alone and not for other rheumatisms as well? I find that very high - this is a quote from a paper on a study about PMR carried out over 30 years in a population in Olmsted County, Minnesota which is a place where research is often carried out since it is a hotspot for PMR and GCA because of the Scandinavian gene pool. This incidence is the one quoted in multiple papers about PMR and GCA:
"The overall age and sex adjusted annual incidence of PMR per 100,000 population aged > or = 50 years was 58.7 (95% CI 52.8,64.7)"
Emis_Moderator paula63201
Posted
It didn't get scrubbed but went for moderation and then was approved. It is here if anyone wants to read the full article.
https://patient.info/forums/discuss/new-to-forum-question-about-medication-and-diet-358111?page=0#996831
It is fine linking to sites such as NIH but there will be a delay until they are approved. That is one site I have asked to be added to an approved list so they won't have to go for moderation in future.
Regards,
Alan
paula63201 EileenH
Posted
I got the statistic above from National Institute of Arthritis and Musculoskeletal and Skin Disease. (NIAMS) It is a different document from the one I posted that was vetted by the moderator and posted (below)
Here is the paragraph:
Caucasian women over the age of 50 have the highest risk of developing polymyalgia rheumatica and giant cell arteritis. Although women are more likely than men to develop the conditions, research suggests that men with giant cell arteritis are more likely to suffer potentially blinding eye involvement. Both conditions almost exclusively affect people over the age of 50. The incidence of both peaks between 70 and 80 years of age.
Polymyalgia rheumatica and giant cell arteritis are both quite common. In the United States, it is estimated that 700 per 100,000 people in the general population over 50 years of age develop polymyalgia rheumatica.1 An estimated 200 per 100,000 people over 50 years of age develop giant cell arteritis.
Their sources are older, however. 1998 for the PMR statistic. 2004 for the GCA one.
MrsO-UK_Surrey barb30898
Posted
One day at zero
7 days at 0.5
One day at zero
6 days at 0.5
One day at zero
5 days at 0.5
One day at zero
4 days at 0.5
One day at zero
3 days at 0.5
One day at zero
2 days at 0.5
2 days at zero
One day at 0.5
3 days at zero
One day at 0.5
4 days at zero
One day at 0.5
5 days at zero
One day at 0.5
6 days at zero
One day at 0.5
7 days at zero
Long winded but it works.
As regards not being able to walk "in a straight line", I found that the very best exercise for me in the later stages of PMR/GCA was to join a Nordic walking class where walking with poles helped in so many way - at the time Age UK were offering free 8-week courses. I also joined a Tai Chi class which helped enormously with my balance which had been practicality non-existent throughout my days on steroids after spending many months in bed undiagnosed therefore untreated.
barb30898 MrsO-UK_Surrey
Posted
i will start, tomorrow
Tai Chi, also sounds like a great idea.
I started it, many years ago, when I didn't have any challenges.
i wish I'do stuck with it, then.
i'm also going to find a 'balance' ball ( for lack of the proper name)
MrsO-UK_Surrey barb30898
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barb30898 MrsO-UK_Surrey
Posted
Here goes...........
christine08718 MrsO-UK_Surrey
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EileenH christine08718
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MrsO-UK_Surrey EileenH
Posted