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Polymyalgia rheumatica

Posted , 35 users are following.

muirkelsi
muirkelsi

I was diagnosed with Polymyalgia rheumatica last November, and the doctor started me on 15mg prednisolone. It was really great, and then started reducing by 1mg every four weeks. I am now seeing a consultant every month, and am down to 8mg daily, but have aching shoulders and arms. I also feel very lethargic. He gave me a prednisolone reduction regime which now has me taking 7mg for the next four weeks, 6mg for four weeks, 5 then 4 then 3 for 8 weeks, 2mg and 1mg for 8 weeks.

Has anyone else reduced by this method?, and will keep going, but would be grateful if they could let me know if it worked.

Kind regards

6 likes, 71 replies

71 Replies

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  • ruth39149
    ruth39149 muirkelsi

    Posted

    Hi Muirkelsi, I have just joined this forum and can relate to a lot of what is being said about this wretched Polymyalgia.  I was diagnosed with PMR 12 years ago (yes 12) and have never been completely free from pain or from the horrible side effects of the dreaded Prednisolone! I also take 2x500mg of Sulfasalazine twice a day, as prescribed by the Rheumatologist.  I have followed the reduction regime as you describe a couple of times over the years when ESR readings dropped and I was able to reduce to 5mg of pred. Unfortunately after about six months I would get a flareup and back to 20/25mg again, this happened a month ago. I have resigned myself to the fact that, in my case, this is how it is going to be.  After talking to other PMR sufferers I have reached the conclusion that even amongst GP's, opinions differ regarding treatment.  Best wishes to all who suffer from this horrible condition.
    • escot
      escot ruth39149

      Posted

      Dear Ruth,

      Although I was diagnosed last year to have PMR  I was not a happy bunny re the steroids and effects, and was referred to see another Rhuemi, who was not happy with the results, and organised a Bone scan for me, which now reveals that I have a form of osteoarthritis where the pains are similar that if PMR,I am now on 4mg of preds, and this newRhuemi wants to get me off of them  and will discuss another form of medication to help with present diagnosis.  On the preds I had fluid retention in my ankles, this has almost gone due to the reduction..I cant say that I do not have pain because I certainly do, especially in my arms and shoulders,etc. but I am pleased I had the bone scan.  which has showed what is wrong

    • ruth39149
      ruth39149 escot

      Posted

      Hello escot good to hear from you, been to the Dr this morning for results of ESR done on Monday, pleased to say the reading is down to 10 so I am able to reduce my preds from 17.5mg to 15mg a day for six weeks, then have another ESR.......hopefully then I will to be able to reduce preds again. I wish I had found this forum a while ago, it has been very interesting to read of other people's experieces of this horrible PMR and realise you are not alone in this battle.  Keep smiling!! Ruth. 
  • Judygirl
    Judygirl muirkelsi

    Posted

    I have been on much the same regimen and at 5mgs was very uncomfortable

    so I've gone up to 6 for a few days and today tried 5 again, because we are all  different it's a matter of getting as low as you can without too much discomfort,

    I've tried Tylenol to get over the bad spots but I hate introducing another chemical

    into my body, I only take prednisone.  I wish you luck figuring out what to do.

     

  • Jaydy
    Jaydy muirkelsi

    Posted

    Your comments etc have bee very helpful. I was diagnosed in April having reached the stage of inability to move. I was put on 20mg + stomach lining capsules + calcium tablets. At first all was much better but painful side affects occurred so my statins were stopped which seemed to relieve the problem. My dosage was educed quite quickly but symptoms returned and having reduced to seven and a half I am now back up to 12 1/2 with the promise from the doctor that the reduction will be much slower from now on. It is a 'strange relief' to find that I am not the only one with almost unbearable exhaustion and lack of the incentive to do anything. Does anyone find that they have red patches appearing which look like healed scratches? Also Has anyone experienced unbearable pain down both shinbones which nothing will relieve and just has to be endured until it finally wears off?
    • noninoni
      noninoni Jaydy

      Posted

      I had shinbone pain like multiple bee stings a few years ago.  My doctor didn't know what it might be so she sent me to ER, and it turned out to be deep vein thrombosis- I had a huge clot all the way up and down my leg.  Fortunately it had not broken off.  So my question is: is it one leg and is it slightly redder and warmer than the other.  If so, you should call your doctor right away.
    • noninoni
      noninoni Jaydy

      Posted

      I have a question for everyone, not  just Jaydy. re  the exhaustion, which I too am experiencing.  My daughter is hypothyroid and when they put her on prednisone for a very bad back, she felt terrible  and wiped out  because the prednisone interferred or reduced her thyroid in some way.  Have those of you with exhaustion had your thyroid level checked?
    • Jaydy
      Jaydy noninoni

      Posted

      I only have half a  thyroid and that is regularly monitered but not since contracting PR so perhaps should look at that. Thanks for the suggestion.
  • Judygirl
    Judygirl muirkelsi

    Posted

    I also was diagnosed in November and was prescribed l5mg prednisone

    which was reduced to l2.5 and l0.   I also had aching shoulders and arms

    and lethargy at 8mg, I took 500 mgs of acetaminophen (or Tylenol) to help me

    through and was able to go down to 7mg for a month, then 6mgs, 5mgs a now

     at 4mgs and am feeling very good.  I do not take any other form of medication.

    I keep busy in the mornings, rest in the afternoon and usually have a good nights

    sleep, however, I must be very careful not to be stressed, it is very bad for me and

    I must avoid it.  

    I do hope you will continue to do well, don't give up if you feel achy, try a Tylenol

    and keep on reducing your prednisone as you have.  I'm an old girl but I'm so

    blessed, keeping the positive in mind is half the battle and respecting and

    listening to your body is imperative.    Sincerely,

     

    • Jaydy
      Jaydy Judygirl

      Posted

      Your report is very encouraging. My daily pattern is much the same as yours and you are absolutely right about the stress and over activity falls into this category as well which is what I find the most difficult. Like you I am an 'old girl' and feel blessed in many ways.
    • erika59785
      erika59785 Judygirl

      Posted

      Stress can cause a lot of problems with PMR.  I notice it every time when it happens......and I HURT!  It is a dreadful disease!
    • barbara75814
      barbara75814 Judygirl

      Posted

      Thanks so much for your very positive message on this board. Too often, I think people here are too quick to describe PMR as " horrible," "wretched," "miserable," etc., when maybe we should be counting our lucky stars we don't have something far worse. 

    • Anhaga
      Anhaga barbara75814

      Posted

      Very true.  Although I wouldn't recomment acetaminophen as it can eventually cause liver problems and has no effect on PMR pain - it could be helping with other pains, however, which I think many of us have.  I find stress avoidance is vital for me! 

  • noninoni
    noninoni muirkelsi

    Posted

    I was tentatively diagnosed with PMR last week with all the classic symptoms and a sed rate of 35, high but not that high.  My cardiologist was the one who diagnosed me and  he put me on only 5mg prednisone. So far it has helped somewhat and I can actually sleep now.  The first thing I noticed was rather strange:  I immediately lost 5 pounds. My ankle edema was reduced.  I am also exhausted much of the time.  I have  to admit I never heard of PMR so I am trying to learn as much as I can!  But I live in Michigan and read one of the posts about how the best forums are in the UK.  Thank you!!!

    My cardiologist is leaving the area, but I will see my primary in a couple of weeks.  From reading your posts, my dose sounds too low, but at least I won't have to reduce it, which sounds terrible.   Should I ask to see a specialist?  All suggestions much appreciated.

        

    • erika59785
      erika59785 noninoni

      Posted

      A knowledgeable GP is all you need.  Luckily my Primary Care Physician actually diagnosed the PMR problem 3 months ago.  I am new at this, too.   This UK Forum is excellent.  I live in Portland, Oregon ---

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey noninoni

      Posted

      noninoni, it would be helpful if you could elaborate on what you describe as your "classic symptoms". 

      PMR usually manifests itself with pain in areas such as the shoulder girdle, hip girdle, front of the thighs, making it difficult to get out of bed or out of a chair or, at its worst, unable to walk. 

      If you do, in fact, have PMR it would be most unusual for a 5mg starting dose to control the inflammation.  Although as you say your sed rate is not unusually high at 35, there are some patients with PMR who never have raised inflammatory markers.  However, it is quite commong for many of us to lose weight in the early days of PMR.

      You haven't mentioned how old you are - we have come across some ladies whose pains have led to a suspicion of PMR but who have later been found to have a hormone deficiency.  Others have gone on to be diagnosed with Rheumatoid Arthritis, whilst others have been fund to have a Vitamin D deficiency - the latter can cause pain similar to that of PMR.

      You do say that the 5mg has "helped somewhat" but if you are still unsure of your diagnosis then a rheumnatologist will be the best port of call for advice.

    • debbie27473
      debbie27473 noninoni

      Posted

      Hi. You are right about the dosage. Normally the recommended start dose is 15mgs a day but if five is working for you that's great. Losing weight is a bonus! I would not think you have been on pred long enough (or on a high enough dose) for that to be the cause. The exhaustion is caused by the PMR itself as it is an auto immune disease. If I have a day when I overdo it, I pay for it with three or four days of falling asleep every time I sit down! This also impairs your thought processes and makes you very emotional and prone to tears and mood swings! You really do have to rest a lot and pace your activities to cope. It takes time to adjust but it is well worth the effort.  I am assuming that as you have (had) a cardiologist, you have a heart problem? A few people (me included) develop heart problems with PMR/pred, but the dr's don't always seem aware of this so keep nagging your dr to make sure you don't miss any signs of returning/worsening problems. Sorry, all very negative but am trying to think of some things I wish I had known about when I was first diagnosed. Welcome to the wonderful world of PMR/Prednisolone! On a cheerful note, you just tapped in to hundreds of friendly, fellow sufferers who are on call any time to understand what you are going through like nobody else can! Its been a real lifeline for me. Take care and good luck, Debbie
    • Oregonjohn-UK
      Oregonjohn-UK erika59785

      Posted

      Hi erika59785 - good to see someone else from OR!  I now live in the UK but was from West Linn!  Just to add reading the thread, we all seem to fit into a similar pattern with side effects or symptoms creaping back.  Best of luck.
    • ruth39149
      ruth39149 debbie27473

      Posted

      Hi Debbie,  your post highlights all the problems that I have experienced with PMR/Pred, including heart problems and exhaustion, I can also fall asleep in the middle of a conversation or on my laptop!!! 

      As far as losing weight is concerned, I wish!!...I have been on Pred now for 12yrs (yes 12yrs) plus medication for Rheumatoid Arthritis and Warfarin for my heart problems, during this time I have gained

      4 stones in weight which of course agrivates the arthritis.

      Still as they say "keep taking the tablets" in my case 17 a day. plus painkillers. I agree with you regarding this site, it is good to share our problems with people who know exactly`how it is.

      Take care of yourself, and keep smiling. Regards Ruth.

       

    • erika59785
      erika59785 Oregonjohn-UK

      Posted

      Hi John, how long have you lived in the UK?  This PMR problem is really crummy!!  I hate to live with some of the pain every day.  I was very active until a couple of months ago.

      I actually have to ask my GP today for a handicap parking permit because the distance of my granddaughters school and where I can park to meet her,  is too far and painful to walk because of my left hip.  I never thought I would need to ask for a permit.  Such is life.....

      Oregon is beautiful.....and not rainy.....this time of the year.

      Greetings,

      Erika  

    • Oregonjohn-UK
      Oregonjohn-UK erika59785

      Posted

      I don't want to hog the thread but it was a long time ago!   I remember the extremes of weather and temperture across the state from the Pacific coastline, across the Williamette Valley, over the Cascades and the 'wild' east.  We have just 'lost' the sun as the weather has changed here in the UK from last week (20c) down to 15c, plus the rain has returned after a very dry September!  If the PMR dosen't depress you the weather will! 
    • erika59785
      erika59785 Oregonjohn-UK

      Posted

      Srangely enough...maybe beause of climate change...the weather has been hot and humid all summer long.  I would like cool weather and rain, but it is not going to happen for a week or so.  I read in the Oregonian today that the Californians tend to want to move to Oregon for  cooler weather (than 90-100 degrees there right now) and WATER which they have a lack of.......

      The world is changing.  

    • Dave-California
      Dave-California erika59785

      Posted

      Well - I guess it is a variation on daily life to chat about the weather rather than "lousey" PMR !!  I really enjoy communicating regularly with all those on patient.info who share their struggles with PMR - so I thought that you might like to know that I am a "Brit" with PMR since February who lives in Los Angeles - by the way - it was 106 degrees the other day - but not humid. Running around in shorts and a T-shirt in this high temperature actually feels good when the pain is driving you crazy.

      I am currently going through a series of medication changes with my rheumatologist - reducing pred to 10 mg, taking 25 gm methotrexate once a week and switching regular pred to delayed release pred (Rayos). As this is something I have not seen others discussing, I will start a new discussion on this later in the week to see if others have been diverted to this combination of drugs.

      Anyway - let's all try to live 'positive' lives and not let PMR drag us down.

       

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