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Help with tapering

Posted , 12 users are following.

barb30898
barb30898

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

30 Replies

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  • teenyjeeny
    teenyjeeny barb30898

    Posted

    Yes I came off altogether for two years before I had another flare up, So yes you can get off it  Like you I have so many other health issues so  it is very hard but you are doing well if you are that low . good luck  Jeannette
  • debbie27473
    debbie27473 barb30898

    Posted

    Hi Barb. It's fantastic that you have managed to reduce so far! I am nowhere near as far along as you so I can't help with stopping the pred but it occurs to me that as you have probably not been very active all the time you have had pmr, your muscles and energy levels are not going to recover overnight. I don't know which sports you used to play but perhaps you could start by only attempting 10mins at a time and slowly building up to longer in five minute increments? I am certainly going to try this when I get off the pred, starting with walking on my beloved Dartmoor! I hate being so inactive. People who didn't know me prior to my health problems (like you I have other conditions to contend with), look at me with disbelief when I tell them that five years ago I played tennis and badminton and swam 18 lengths twice a week as well as walking for miles accross the moors with my daughter, to say nothing of the jiving. Fingers crossed we can all get back some of our pre-pmr lives one day. Good luck and don't give up! Debbie
    • tina-uk_cwall
      tina-uk_cwall debbie27473

      Posted

      Hello Debbie, I agree with your thinking re the exercise. It is well known that steriods do inhibit the working capacity of our muscles, also, barb, I don't know how long you have actually had PMR, but unfortunately our bodies do also become less tolerant of exercise as we get older anyway. But, having said that the little exercise a day route sounds good to me. Barb, I wish you all the best reaching to zero, but may I ask how long have you been a sufferer for? 

      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
      barb30898 tina-uk_cwall

      Posted

      Hi Christina,

      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
      tina-uk_cwall barb30898

      Posted

      Hi barb, yes how right you are. Like you I presented myself to my then gp with all the usual symptoms of PMR, not that I knew that at the time. She had no idea what was wrong with me. To cut along story short by the time of my rheumatologist appointment which was 3 months since the first symtoms I could not walk, sleep, well you know, and the pain, unbearable. My rheumatologist prescribed 15 mgs of prednisone and within 4 hours of my first dose I could move my head from side to side and I could walk unaided upstairs. I cried for joy. When I then looked up my illness online and saw that I was suffering from every  symtom and that this condition in GB effects about 1 in very 1200, approx, I was disgusted that my GP couldn't diagnose it and had left me in such pain for 3 months. So as you can imagine I changed drs surgery and have never looked back. My GP is so well informed and really looks after me.

      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
      barb30898 tina-uk_cwall

      Posted

      Hi Christina,

      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

    • tina-uk_cwall
      tina-uk_cwall barb30898

      Posted

      You know barb I was reading an article relating to PMR in Scandinavia and I'm sure I read a figure of 1 in every 133 people in Scandinavia suffers from PMR. Eileen, please correct me if I'm wrong. That figure if right is incredible, and I'm trying to think off the top of my head of other conditions that effect such a huge number of a given population. Christina 
    • barb30898
      barb30898 debbie27473

      Posted

      sorry, I pushed the wrong button.

      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
      EileenH tina-uk_cwall

      Posted

      Don't know off the top of my head - that figure could well be right for over 65s though. It is the most common inflammatory arthritis on that age group. If you take the whole population it is much lower of course as it tends to be identified in older patients. I can find a figure claiming 2% of over 60s in the UK. It depends on the local population ancestry - much more common amongst people with Scandinavian forebears and almost unknown amongst people with black ancestry - note, ALMOST! There is a lady with native American and African American ancestors on the forum!

      And whilst GCA is a rare disease overall, it is the most common large vessel vasculitis in older patients.

    • paula63201
      paula63201 barb30898

      Posted

      According to an NIH August 2012 article I read, the number in the US was an estimated 700 per 100,000 people over 50 develop PMR and 200 per 100,000 over 50 years old for GCA. I cited this before, but my post got scrubbed by the moderator. Not sure why. 
    • EileenH
      EileenH paula63201

      Posted

      Did you put in the link? Only approved links are let through or links within this site. That's why I post a link to a post with links which have been pre-approved. 

      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)"

    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen,

      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
    MrsO-UK_Surrey barb30898

    Posted

    Barb, the easiest and most successful way for you to reduce from half a mg to zero would be as follows:

    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
      barb30898 MrsO-UK_Surrey

      Posted

      Thanks so much for the detailed explanation of how and when to taper to '0"

      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
      MrsO-UK_Surrey barb30898

      Posted

      Good luck, Barb.  As you can imagine, zero is a great place to be!  Even more especially for you, I imagine, as you have other health problems to cope with.  If you feel any pain returning at any stage of the reduction, you can always 'hover' there for a bit longer.
    • christine08718
      christine08718 MrsO-UK_Surrey

      Posted

      Dear Mrs O, I have been trying to reduce from 0.5 to zero using this method & have got to 6 days zero, ie almost to the end, & I've started to get back pains which I think are my body starting to resist the final reduction.  Should I carry on anyway, & if not, what should I do?
    • EileenH
      EileenH christine08718

      Posted

      I would go back to say 3 days zero/1 day 0.5 and stick there for a few weeks and see what transpires. If the pain gets worse it would suggest it is PMR reminding you it still exists and maybe you will need to go back to 0.5 every day and start again even more slowly, i.e. repeating stesps a few times before giong to the next.. To be honest - at 0.5mg/day i wouldn't care how long it took to get off!!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Christine, oh what a pity.  Is the back pain the same as previous PMR pain, or have you perhaps overdone things recently just because you have felt better, and perhaps aggravated those steroid-weakened muscles?  I would have suggested something similar to Eileen, marking time at the same dose for a while to see if your pain improves, but don't hesitate to return to 0.5 every day if necessary - there are unlikely to be any side effects at that dose.  Do continue to give yourself lots of TLC, remembering that once you reach zero Pred it will take at least a year for your body to return to it's pre-PMR/steroid state.  Meanwhile, you have to respect those steroid-weakened muscles.   
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