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Strange knee pain

Posted , 8 users are following.

hugh79987
hugh79987

Hello everyone,

I've had PMR for 5 months now and after a rocky start, with help from members of this forum things have settled down, being pretty much pain free and coping with a variety of exercise. I am now down to 17mg (from 40!) which I take at 6am and then try to sleep for a couple of hours (this suggestion from Eileen helped enormously) but as I went down to 16mg I have developed a strange pain in my left knee. I had also been doing quite a lot of cycling. The pain comes on at night and feels like a very tender area on the inside of the knee. I can locate the spot just under the skin and about a centimetre in diameter. It can be painful enough to stop me sleeping and I have resorted to ibroprofin which helps a bit.  It's quite hard to walk but the pain usually eases off and can disappear completely later on in the day, with no tenderness to the knee at all. This thing is that I had exactly the same symptoms a few months ago with my other knee, but that went away quite quickly. I'm sure this is something to do with my PMR because if the daily pattern and because it happened before but one does not read much about PMR knee problems. I've reluctantly increased my dose back up to 18 to see whether this makes a difference and also am considering a local cortisone injection (I've had this for both shoulders, which worked well). I'm on holiday at the moment and saw a local doctor about an injection. He suggested I take 16mg at night as well as 16mg in the morning! For obvious reasons I don't want to do that. Compared to so many who are far worse off than me this might seem rather trivial but not sleeping at night because of this is a pain in every sense of the word. 

0 likes, 9 replies

9 Replies

  • pauline36422
    pauline36422 hugh79987

    Posted

    sounds like little bit of  fluid  if its  teder to touch.  and i  certainly  wouldnt 16    at night aswell as the 16 at morning.  but then i am not an expert. only going on my own  thoughts. and the help of this wonderfull  forum     good luck x

     

  • denise76179
    denise76179 hugh79987

    Posted

    Hugh

    My sympathies,I had the same thing - pain in one knee for a while then the other - quite stiff also in the morning and getting better towards the afternoon.  Then after about a year both knees seemed to get better - massage machine helped I think and probably Bowen Massage.  Still have a little tenderness in one knee and one shoulder although I can use them quite well now and if not kneeling or reaching really high respectively.have no pain at all.   The pain seems to move around in the body while it works its way out(as weird as that sounds) as I then got pain in the fingers and couldn't clench my fists.  That too has now almost gone and I think I'm out of the woods - taking 3mg pred. and feeling quite good although after a full active day ( no afternoon sleeps necessary now) I get a bit tired and drop into bed 8:30pm - 9pm.  I'm 15months into PMR and reducing very slowly.  This in mind from my experience I'd say you've a way to go yet for this PMR to work its way out.  Massage did help and I hope this info helps as well

  • tina-uk_cwall
    tina-uk_cwall hugh79987

    Posted

    Hello Hugh, like Pauline I am no expert, but I will say this, don't put every twinge, swelling, ache or pain down to PMR or preds, even if they were present at the time of diagnosis or start of preds. It could be nothing more than coincidence and as many of us know it is possible to have multiple medical problems.

    definately don't up your preds to 2x16mgs. And I would probably not have even raised my preds to 18mgs because I think all of this is due to exercise. Remember whilst we are on the higher doses, these higher doses can mask other unrelated inflamatory conditions and over exercise can cause inflammation, boy I should know! Now that I'm onto the lower doses, 7.5 all my old sporting injury pains are returning if I over do things, and I know on occasions I have as I can't wait to play my tennis, do my aerobics, dance my Zumba.

    i personally on return from holiday would visit my GP and see if he would refer me, or at the very least book me in for a scan of the knee, then take it from there.

    one word of caution, preds and ibuprofen are not best friends, and in fact we are advised never to mix the 2. Try paracetamol and see how you get on with that. The fact that the ibuprofen works at releiving the pain could indicate that you do have inflamation on your knee, but that inflamation may not be PMR related.

    enjoy the rest of your holiday. Regards, tina

  • EileenH
    EileenH hugh79987

    Posted

    Be careful using ibuprofen - NSAIDs and pred don't make good bedfellows and together can lead to gastric problems.

    The dose you are on is very high for PMR - 40mg is a usual starting dose for GCA and using such high doses for PMR can confuse things. The response of your symptoms to a moderate starting dose of 15-20mg is typical of PMR, if a higher dose is required then it raises the question "Is this really PMR?" - higher doses will manage other inflammatory arthritises but there are other medications which do the job better with less in the way of side effects. High dose pred has its risks - low dose pred over a long period is a different matter altogether. BUt I would say your doctor is out of his depth and could do with some education. Or you could do with a more aware doctor. Reacting to a sore knee with an increase in pred dose to that sort of level is a stab in the dark - not everything is PMR and PMR does not need that amount of pred.

    • hugh79987
      hugh79987 EileenH

      Posted

      I agree dose is high, but that's because I was on a high dose in the first place. I have been tapering down at 1mg every two weeks and have got down to 16. I know this is a bit fast (although much slower that Rheumy would have had me on - 2.5 every week which lead to problems). Once down to 15 I was intending to slow down towards your recommendations. I do feel I am over-medicated for my PMR at the momen but I am aware of reducing predisone too quickly. The knee thing may well be nothing to do with PMR which is why I put the question on the forum. I've had many knee issues in the past but none have felt like this. Thanks for warning about ibroprofin - I was aware of this and have only done it rarely. 

      Hugh

  • patricia59727
    patricia59727 hugh79987

    Posted

    Hi Hugh I have been on Pred now for a year and 4 months, Started on 15mg x 2 weeks then 20mg x 2weeks got down to 9mg in 8 months had a flare then it was up to 30mg, 5months and got down to 8mg stayed on 8mg for 5 weeks even though I was having problems because of wieght and edema in Legs,Knees are Verry Painful ,But I have ended up back up on 40mg this time,Have started Reducing and am on my second week of 35mg,Will have to take it slow this time. So think the Knees could be a bit of everything, where and tear,Edema,PMR, And trying to be clever in the Garden.
  • LayneTX
    LayneTX hugh79987

    Posted

    Hi Hugh,

    since PMR, I've found a great Physical Therapist, and he has taught me so much I wish I knew years ago when I was athletic!!  Mainly about the body positions and how to engage the main areas, the hips and shoulders, properly is really helping me.  

    I used to cycle a lot when training for Ironman trialthon.  

    Perhaps your aching knee (I'm assuming PMR might exaggerate things) is telling you something about your posture. Perhaps your bike seat height, or position of your foot in relation to your knee on your pedal?  Or if PMR affected your hips perhaps your hips are compensating...

    Just thoughts from some of my new experiences. 

    Good luck, hope for less pain for you and happier cycling. wink 

    • hugh79987
      hugh79987 LayneTX

      Posted

      Hi Layne,

      Thanks for your thoughts. I think that my bike is set up properly (I was fitted by a professional) and I have paid attention to cleat position, float etc. Two things make me think the problem is related to PMR, the fact I had exactly the same thing in the other knee a few months ago, when I had done no cycling and that the pain goes away during the day and comes back at night. I have read that PMR causes inflamation of the linings of joints and I think that this is what is going on - the lining of the interior part of my knee is getting inflamed. The good news is that the problem seems to be going away, less painful at night and disappearing more quickly during the day. If there is one thing I have learned from this forum is that PMR takes many forms and affects lots of different parts of the body in different ways. One of the things that was mentioned in this discussion is how PMR pain and stiffness seems to move around the body - maybe because we strain something and PMR tends to settle on any weakness making it worse. Earlier on in my PMR journey I had problems with both knees which felt like fluid accumulation behind the knee (a problems I've had in the past due to a damaged meniscus). Anyway, back to 16mg prod this morning and I'll drop to 15 mg in about 10 days or so.

      Hugh

    • LayneTX
      LayneTX hugh79987

      Posted

      Hee, hee, Hugh, you certainly are not a stranger to cycling!  I remeber not knowing about proper set up and see people on bikes WAY too short and feel so sorry for them. wink

      glad ad to hear your experiences, though sorry, I think you are right, I did some heavy duty rows and planks and someone on forum asked if anyone has pain between their shoulder blades...well, I do now! Grrrrr. 

      But when I do an exercise PT gave me it helps feel better.

       

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