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New pain - is it related to my PMR

Posted , 14 users are following.

sastew
sastew

Diagnosied with PMR about 10 weeks ago and down to 9mg Pred (I know, most of you will say this is too low!).  I do feel absolutely fine but am struggling to walk any distance if there is an incline of any sort.  My ankles, shins and calfs ache to the point where I can't push through the pain and have to stop.  The pain goes almost immediately I stop and certainly when I stop or walk downhill the pain goes straight away.  I wonder if its something to do with the flexing of the foot on an incline?  Never had anything like this before and seems to have come on since a drop to 10mg then 9mg Pred, however my PMR was/is in my hip joints.  Any ideas - other than increasing my Pred - already got a fatter face which I'm not liking!

1 like, 16 replies

16 Replies

  • nervebyte
    nervebyte sastew

    Posted

    i share similar experiences. I have to find a balance regarding exercise which I push myself to maintain; for me it's worse w/o exercise. I believe it's a question of pushing oneself  'a bit' and we have to discover our own limits. I've decided to live with a somewhat higher pain threshold because it allows me more activity. I don't love the pain however this acceptance helps me deal with my PMR reality.

     

  • Nefret
    Nefret sastew

    Posted

    I remember this problem very well, sastew.  It was much harder to go up hills than down them and it stirred up a balancing problem - my husband used to call me 'Lurch' as I couldn't walk in a straight line.

    I think you will find that there are many of us who have/have had this problem and I also think that it's one of those things which come and go of their own accord.  Looking back, I really can't put my finger on a specific time I realised it had gone, but that might be that so many other things happened to keep me occupied, I just didn't notice!

    Remember though that PMR affected muscles can contribute to referred pain.  You might be experiencing pain in your legs which is actually coming from the groin area.  Unfortunately no painkillers help with PMR pain - I certainly haven't found one.

    As you reduced the steroids so quickly, I do think this may be a case of 'payback' pain.

    • sastew
      sastew Nefret

      Posted

      Thanks Nefret, and you're right - think this could be payback!
  • Kdemers
    Kdemers sastew

    Posted

    I know the pain and remember it well.  I could do little and I used to bike 4 times a week.   a physical therapist helped me somewhat as muscles began cramping and spasming.  My biggest new awarenes--three years ago- came from the concept that PMR is inflammation and inflammation can lead to muscle reaction. Later my problem was jaw claudation with GCA--the inflammation caused the jaw to tense  etc.

    If you can move through the pain do so, if you can't most likely up the Pred.

    .   

    I think you can work with muscles but inflammtion is a differnt matter.

    It is hard for me to comment a I am doing so well with an antiviral.

  • ptolemy
    ptolemy sastew

    Posted

    I find walking up a slope really difficult, I feel so stupid. Steps cause the same problem. 
  • angelcake61
    angelcake61 sastew

    Posted

    What dose did you commence on ? 

    I was started on 15mg initially and as I got to under 10 I had a flare and had to go back to the 15 mg so it's not worth going down to fast as in the long run it becomes a slower way. 

    When I got to 10 I gave it a month,  then did 9 on alternate days for a month then 9 for a month and again alternate days at 8mg.

    Its taken over 2 years but I've stayed at 3 mg for quite a while now because of the cold weather, I can this last week start to feel my wrist and up to my elbow giving me PMR pain.    I have a routine appointment on Fri and will ask the docs advice on upping.

    I never want to go back to the pain I had over 2years ago.

  • EileenH
    EileenH sastew

    Posted

    What you describe sounds like claudication - the blood supply to the muscles isn't adequate to cope with extra exertion - and it might be worth asking your practice nurse to check your ankle pressures to be sure they are OK. That would refer to the larger arteries in the leg though and in PMR it is the microcirculation in the muscles that is probably affected (the very tiny arterial capillaries in the organs and muscles). That may not affect the ankle pressures (it's the same idea as your arm BP).

    kerry mentions "jaw claudation with GCA--the inflammation caused the jaw to tense" - that isn't the cause of claudication, it is simply inadequate blood supply, the muscle go into oxygen deficit and the pain tells you to rest them until they recover.

    9mg is only too low if it isn't managing your symptoms acceptably - at what dose does this leg problem NOT happen? It might be worth sticking there for a few weeks and then trying a small reduction again - if there is residual inflammation the rest may be OK but just not this bit in the calves. The slow reduction has several sides to it - the faster the better in some senses but you have to be sure all the residual inflammation has been cleared out and all the new daily inflammation too. That may have happened right at the start but once you got to about 11 or 12mg it wasn't quite "emptying the bucket" every morning - and eventually it builds up to a noticeable level. The lower you get, the faster that will happen.

    • sastew
      sastew EileenH

      Posted

      Thanks Eileen, that's very helpful.
    • elizabeth20640
      elizabeth20640 EileenH

      Posted

      Hi Eileen just met someone today who has vasculitis, he 44 and has kidney problems as a results, 

      i was reading up on it there, just wondering what is the difference between vasculitis and GCA and PMR? Symptoms seem to be same so how would you know? As to which one you have.

      Eileen just on another note, I'm having a colonoscopy on 30th January,

      do I still take my pred while taken the prep stuff,

      thanks Eileen

    • EileenH
      EileenH elizabeth20640

      Posted

      Colonoscopy first - as long as the pred has been in your stomach for an hour it should have been absorbed. I don't know how they do it in the UK - here you get a couple of litres of "stuff" the evening before after a clear liquids lunch. Then more of the "stuff" the next morning so you do have a chance to take the pred an hour before starting on it. I can't remember what I did now but it did say to take any medications as normal.

      Vasculitis is the general name for all varieties of inflammation of blood vessels - GCA and PMR are just two forms. It's like dogs, Labradors and poodles are dogs but not all dogs are labradors or poodles: PMR/GCA are forms of vasculitis, vasculitis isn't always PMR/GCA. 

      Differentiation comes partly via the age - hence the problems we have persuading doctors that a 44 year old CAN have PMR. Unfortunately, although rheumatologists claim to be specialists in vasculitis they seem often to be a bit short sighted and don't always think laterally. But that is the main reason that patients who present with PMR or GCA symptoms that don't seem to fit with the age should be referred to a rheumatologist and the GP shouldn't really mess about. The same applies to any patient who doesn't respond typically with a moderate dose of pred - it doesn't mean it ISN'T PMR but it does mean some other fancier tests should be done that, as far as I know, GPs aren't entitled to request and probably wouldn't know how to interpret even if they knew about them. Using a higher dose of pred for whatever reason muddies the water a bit - other things will respond to high dose pred but PMR should respond to a lower dose. 

      In the final analysis, fancy imaging will show up where inflammation is to be found. Only biopsy will actually show the giant cells or other pathology (abnormal states of tissues) so the only time you get a 100% answer is either with a positive TAB  for GCA - or eventually at a post-mortem. It's a bit difficult to biopsy the aorta without open heart surgery for example! As I said, there are other blood tests that will give signposts to other autoimmune diseases but in the end the name of the diagnosis depends on what they found. They often used to be named after the doctor that noticed he had maybe a few patients with similar symptoms or one patient with signs and symptoms that weren't accounted for by any name in the books - so he wrote a paper describing it and gave it a name. Usually his own! These days some have been renamed to reflect the lab findings - then you don't have quite such a narrow band to fit it into.

    • elizabeth20640
      elizabeth20640 EileenH

      Posted

      Thanks for that Eileen, just scary when you think of all the arteries that could be inflamed and all the organs that could be affected, 

      i know it's the capillaries that are involved in PMR, but do veins play a part,

      and would the inflammation be in different parts of your body at the one time? 

    • EileenH
      EileenH elizabeth20640

      Posted

      Veins? No I don't think there is any sign of that at all. It is said that it is only in blood vessels that have an elastic layer to their structure - it isn't even all arteries, some don't have that layer in the vessel wall. Yes, you could have inflammation in various arteries and that gives rise then to different localised symptoms. 

      Doesn't really do to think about where it might be ;-)

    • elizabeth20640
      elizabeth20640 EileenH

      Posted

      Ye I know what you mean, have myself driven crazy here, thanks Eileen where would be without you😀🍷🍹
  • diana21296
    diana21296 sastew

    Posted

    I had a friend who was kept on 30mg for first 3 months governed by blood tests every month, then started to drop very slowly and he still came off very successfully in 2 years. I am on 30mg split dose now after 4 weeks, 20mg with breakfast and 10mg at 5pm as taking 30mg with breakfast gave me very painful nights till 11am as the Pred left my body around 1am and have felt dreadful and very tired all day.    I am now completely pain free and sleeping fine although lightly.  I am frightened of relapes and pain etc so intend to do it very slowy as want my life back which we all do. 
  • marian24743
    marian24743 sastew

    Posted

    Sympathise with you re walking up even a small incline - I too get this awful pain even going up a small incline & have to go up stairs one at a time! So grateful for this website. Have been diagnosed for 10 wks but knew something was wrong well before that. Dr gave me a leaflet about symptons etc but so many things not on there & its reassuring to read of people getting the same probs. i.e. incline probs, also dry eyes, & sometime a tremor. I am down to 10mg now & see Dr next week to see if I have to reduce Preds anymore.
    • EileenH
      EileenH marian24743

      Posted

      Hmmm - not sure you should be reducing yet if it is that bad. And you could probably do with a few more investigations to rule out other things. Just a thought.
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