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Just got official dx of PMR.

Posted , 7 users are following.

ingo
ingo

Dealing with pain since mid Dec.  At that time only shoulders.  Had MRIs on both shoulders and showed many partial thickness tears in rotator cuffs and surrounding tissues.  Sent to Orthopedist and got cortisone shots in both shoulders.  Worked for about 2 1/2 weeks.  Also have been on PT.  I'm a very active 68 year old man, but my PC got suspicious and thought it might be PMR.  He started me on 20mg pred and symptoms started getting relief pretty quickly.  Just had confirming lab tests.  Will be seeing a Rheumatologist at end of April.  Tried tapering to 15mg but pain started returning,  How long does it usually take before tapering can really begin?

2 likes, 13 replies

13 Replies

  • pat38625
    pat38625 ingo

    Posted

    Hi Ingo, welcome but sorry to hear about your PMR.  I am relatively new to PMR, November "14 and was put on 20mg of pred.  It was 9 weeks after that, that I reduced to 17.5mg for 6 weeks and then 15mg for 6 weeks and am hoping to reduce to 12.5mg Monday (which is approx 6 weeks).  Everyone is different and our lifestyles are different as well.  I do know from Eileen and others on this forum that the slower you reduce then there is less likelihood of flares.  

    Also you need to take it easy because when you get pain relief through pred, you feel so much better and then (like me) tried to catch up on things, to my cost I may add.  Try and pace yourself, you will get to know what works for you and what doesn't.  Good luck on your journey.  I would be lost without this formum so stick around, you really do get the best support, advice and information from these good caring people.  Regards Pat

    • ingo
      ingo pat38625

      Posted

      Thanks for the reply.  I'm starting to feel more comfortable talking to people and the support is very valuable to me.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey ingo

    Posted

    Ingo, it sounds as though you have reduced too soon and by too large an amount.  You really need to stay on the starting dose for 4-6 weeks, before trying a reduction to 17.5 but no lower, and then remaining at that dose for a similar time.

     We can usually experience around a 75% improvement in our pain levels within a few days or even hours of the starting dose.  However, that doesn't mean that the inflammation is under sufficient control to stabilise it.  The steroids aren't curing anything - sadly there is no cure at present - they are just damping down the inflammation that causes the pain until PMR goes into remission when it is ready, and that can take anything up to 2 years for some and much longer for others.

    The lab tests don't actually confirm PMR as both ESR and CRP can be raised due to a number of other condtions, including infections/viruses.  However, the blood tests, along with your symptoms, can be used as a guide, if repeated before any planned reduction.

    • ingo
      ingo MrsO-UK_Surrey

      Posted

      Thanks for the info.  I did have blood work this week to rule out any other diseases.  Looks like I'm stuck with PMR.
  • Mrs.Mac-Canada
    Mrs.Mac-Canada ingo

    Posted

    Hi Ingo,  Pat is spot on with her advice and you will hear from the experts soon I'm sure.

    my advice would be to read as much as you can on this forum.  PMR is very different for everyone but the experiences of the people hear have proven a life saver for me (or flare saver😋)

    Slow and slower is the rule here when decreasing.  If you yo-yo with flares you'll find it more and more difficult to get to the level that manages the inflammation. 

    Some doctors tend to want you to reduce to quickly. If you happen to have one of those please take him/them the Bristol plan. There is also other information available and I'm sure you will be given the links if you need them.

    hope you have a Happy and pain free Easter.

    Diana🌸

    • ingo
      ingo Mrs.Mac-Canada

      Posted

      Thanks for the advice.  I feel better already.  I'm ready to deal with this and am an eternal optomist.
  • Oregonjohn-UK
    Oregonjohn-UK ingo

    Posted

    Hi Ingo - welcome to the PMR forum.  As other have already said you will find lots of very useful advice and hints.  PMR is the symptoms of the underlining problem with your autoimmune system, this cannot be cured with preds it only contains the symptoms.   The big secret is not to try and come off preds too quick and learn to reduce SLOWLY.  There is a lot of info here https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    Best of luck, John

    • ingo
      ingo Oregonjohn-UK

      Posted

      John,  Are there any good dietery ways to deal with PMR?  I've started making tumeric tea and drinking apple cider vinegar drinks. Have you had any luck by controling diet?
    • Oregonjohn-UK
      Oregonjohn-UK ingo

      Posted

      I'm not a great believer in diets - life style - yes.  I have always, pre PMR, been very fit and healthy, even though I officially retired 15 years ago I keep very active mentally - started up a new business from home (until 2013) and became a school governor in 2 schools.  I've never been overweight, but I have increased over the Christmas time (was in for day surgery just before) by a few pounds and have now started back with my usual brisk walking and now gardening.  Have started Tia Chi as a means of gentle exercise and also to reduce stress. I do avoid most of the 'naughty' foods that contain too much sugar and salt.
    • margaret22251
      margaret22251 ingo

      Posted

      how do you make turmeric tea please, what does it taste like.
    • ingo
      ingo margaret22251

      Posted

      I got tumeric powder from my health food store.  Boil 4 cups of water and place 1 tsp of powder in and simmer for 10 minutes.  Run it through a filter.  It has a little bit of a bitter taste.  I place some honey in for taste.  My daughter gave me a link to a web site for Dr. Weil.  Some good advise.  Also recommeded apple cider vinegar.  I'm taking it in a glass of water about 2-3 times/day.  Also add a litle honey for taste. Both supposed to be good as anti-inflammatory remedies.  Only time will tell.  I'm new to all this.
    • margaret22251
      margaret22251 ingo

      Posted

      I add turmeric to my soups and stews, over did it the other could not eat my soup it was vile, i think i was thinking get lots down you the pain will go.

      I now have started to think of my body as a machine, try to help or mend it where i can( idf a car needs oil put in oil etc)but i know we cannot treat our bodies the same, but i sure as hell am trying, never read so much about anti - inflamotary foods.

      I thought i uesed look after myself, then something like this happens and i wish i had done more, maybe then this would not have happened, but we are all different and things break down.

      Keep me informed, oh do you know you can but turmeric capsules, and i am sure i read some where that you have to be carefull with other medicines when you take turmeric, dont quote me on this, but i will see if i can find the article again. Good luck biggrin

  • EileenH
    EileenH ingo

    Posted

    It's all been said while I was asleep! Even the links I was about to copy and paste!

    There are a load more links in there now Ingo - have a good read. There's a lot of really good info on the PMRGCAUK northeast site in particular, as well as patient stories - most of whom have now recovered. The Quick and Kirwan paper (Bristol paper) is good about management for your PC's reference, it's aimed at him.

    A basic rule of reduction is never to try to reduce by more than 10% of the current dose at a time - so 2mgs now, 1.5 at 15mg and so on. Some people can't even manage that without their body protesting at the withdrawal and in the replies to that thread the link is for is a very slow reduction. It or something very similar is being used by a few rheumies in the UK and is being studied by a PMR reserach group in the north of England.

    If you reduce and the pain starts immediately it is most likely steroid withdrawal discomfort which will then improve over the following days/weeks. A flare of the PMR may happen quickly but will get worse as time goes on. You need to get the symptoms well under control before thinking of reducing - Kirwan recommends 6 weeks and that is fairly standard amongst the good rheumies I think.

    Oh - and be VERY careful with physiotherapy - repeated or sustained actions are poison in PMR. Your muscles are intolerant of acute exercise - they won't warn you you are doing too much and they will take far longer than usual to recover. If you exercise keep it in small amounts, take note of what you do that is OK or what is too much and learn to pace yourself. You will be able to do more - but build it up slowly and always have a rest day between doing things. You will manage more if you do 5 mins, rest, another 5 mins, rest (or something like that). I could ski 4 short runs with rests on the lift, I couldn't do a single longer run that was far less altogether - at the beginning of the season. But later in the season it was OK.

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