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I have had painful legs for 3 months and a Moon face

Posted , 6 users are following.

track
track

I have been away on holiday and home now for 1 month.  I was wondering if other PMR sufferers have had this constant pain in legs and upper arms.  My Dr has tapered my Pred. down from 36mg to 10mg over 1 month, he was concerned of long term use of Predn. which I have been on for nearly 1 year now. My legs only started to improve yesterday, but still sore, even to touch.  He sent me to a Physio and he more or less told me what I have been doing, walking for half an hour each  day and to keep this up, though I am getting very tired and a bit breathless, especially going up hill.  

I am also wondering if other sufferers have had strange things happen to them with this Predn.   I shaved my legs  7 weeks ago (as you do), and the hairs have not grown back, then I discovered very white down hair growing on the sides of my face, my Dr said this is the Predn.  Also I have had a Moon face for 3 months, which is quite worrying.  I am suplementing my Pred. with Panomax 500m which is a Paracetemol, I take 3 to 4 daily, to help with discomfort.

My blood pressure is normal, though my pulse rate has gone up over 100, the physio was quite concerned as it was 118, this has not happened before, maybe it is the Predn. doing this. I am due to see my Dr in another 5 days. 

My last blood test  ESR was normal, inflammation was very high, that was 5 weeks ago.

I have been reading these discussions, and really appreciate your views on all the different problems that are displayed here.

thank you,

Track

0 likes, 14 replies

14 Replies

  • tavidu
    tavidu track

    Posted

    Hi track, your doctor should be made to suffer the same pain as you and obviously does not understand PMR. To reduce from 35mg to 10mg in such a short while can cause you no end of problems and suffering. I would up your dose to 15mg or even 20mg to see if the pain eases and then stay on that dose for at least a month before considering a reduction. Get the pain under control then think about a 1mg drop every month to six weeks. Ask your doctor to take a look at this website if he wishes to gain knowledge regarding PMR. Sorry to rant but I feel that doctors like yours (I had one myself) are ignorant regarding this illness. Good luck but control the pain first and then reduce very slowly, its the only way. 
    • track
      track tavidu

      Posted

      Thank you Tavidu,

      I realise he dropped me to fast, he said I was on Predn. too long, been on it for 1 year now, however I will take on board the advice I am receiving from this forum, and taper down slowly.  I have given my Dr some information I have discovered on my Computer and he seems to take it on board with no worries, I will certainly put my foot down now if he suggest tapering faster than necessary.

      thank you once again.

      Track

    • tavidu
      tavidu track

      Posted

      Hi track. I have had PMR for 2 years now and started off on 20 then 25mg before the pain subsided. I have had a few ups and downs with the odd flare and I have put on approx 1 stone in weight and also have hampster cheeks. My skin has thinned so bruising is quite common with me but I am relatively pain free apart from upper arm and the odd leg ache, so I feel lucky compared to some others. I have only managed to get down to 13mg in those two years but I hope that in time I will be able to reduce. Good luck and I hope all goes well.
  • Handbrake
    Handbrake track

    Posted

    Hi track, sounds like you have cushions syndrome as a result of too much corticosteroid in your system. treatment is reduction of prednisolone however your withdrawal appears too fast for you and Definately needs to be slowed down at this point. You did say you were feeling a bit better so I would stay at 10mg until your feeling more comfortable. Are you also taking your calcium and vit d (ask your dr when you see him next week for a vit d test) low vit D Can also cause these pains. 20 mins of walking is also important to your wellbeing so stick with it if you can or do alternate days so you have one rest day one walking day. There's lots of support from people on here so stay tuned,

    take care x

    • track
      track Handbrake

      Posted

      Thank you for replying, much appreciated.   My Vit. D is okay I had a testt

      done 1 month ago, so happy there.  I noted that the Dr. dropped me very fast I questioned him re this, but he said to do it, it was over a 3 week period, i maybe did not mention this, but I know it was still too quick.

      thank you for your input.

      regards,  Track

  • EileenH
    EileenH track

    Posted

    "My last blood test  ESR was normal, inflammation was very high, that was 5 weeks ago."

    That doesn't make sense - ESR is a measure of inflammation.

    I would suspect that part of your pain is now something called "steroid withdrawal rheumatism" - that is a far too fast reduction after being on pred for a year. Do I understand you have been on above 30mg for the entire time? If so, that was not only too high a starting dose for PMR but you should also have started reducing after a few weeks. I do understand why your doctor is concerned about being on pred for so long at that dose - unless you were originally diagnosed with GCA which DOES require those sort of doses. However - if you need a bit more than 10mg to manage the PMR currently then you will have pain again. If the cause of the PMR is still active, the pain and other symptoms will always return at too low a dose.

    If what you have is PMR then it is unlikely that paracetamol will do anything useful (more and more evidence is being published that it doesn't do much for anything musculoskeletal but that's another story!). Pred is the pain management medication in PMR and the idea should be to start with about 20mg, achieve a good result and then reduce to find the lowest dose that achieves that. Done slowly and carefull most people get to below 10mg for longer term management until the cause of the PMR goes into remission - which can take from 2 to 5 years or even longer for some.

    All the things you describe are common side effects of pred - but will often go as you reduce the dose. 

    You will find links to a lot of reliable info via this link:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    • track
      track EileenH

      Posted

      EileenH,

      sorry I may have misled you, my ESR was normal though CRP was very high, which I am assuming is inflammation.   I was diagnosed with GCA last year and he started me off on 50mgs Predn. tapering down over a few months to 15mg when I had a relapse.  Then up again to 36 mg Pred, which was on for for quite a lot of weeks.  On coming back from my holiday in April, that is when he decided to drop the Predn. quite dramatically.  I am still on 10mgs at this point, and feel the discomfort in my legs when the medication wears off after 12 hours.  I am due to visit with him in 4 days time, when I am sure he will want to drop my med. again, though I will certainly take note of how much he will want to drop it.  I had a very good day yesterday, no pains when med. wore off, but now back to pain again, though not as bad.

      thanking you for your feedback.

      Track

  • ptolemy
    ptolemy track

    Posted

    I am amazed that you managed to go from 36mg to 10mg in a month. I think I would have been a basket case if I had reduced so quickly. When I started pred I was told that if I cut out gluten and simple carbs I would not get a moon face. In fact in my case it worked, of course it may have been just luck. My legs can be tender too. My doctor does not know why. 
    • EileenH
      EileenH ptolemy

      Posted

      My thigh muscles are really tender at present - it always happens with a flare of PMR. Some experts mention tender muscles - especially biceps and quads.
    • ptolemy
      ptolemy EileenH

      Posted

      My GP suggests I see an orthopaedic surgeon. Had a contre temp with him on the phone today when he suggested I start on AA as I had been on pred for a while. I said only when I show a negative T. He backed off, I think he is a bit frightened of me! 
    • EileenH
      EileenH ptolemy

      Posted

      Has he at least had the decency to refer you for a dexascan? 

      I do't think I have frightened GPs - but they know not to mess with me!

      And why an orthopaedic SURGEON? You don't need a new hip or knee do you?

    • ptolemy
      ptolemy EileenH

      Posted

      No Dexascan, I had one eighteen months ago which was pretty good. I told him that, but he was panicking about long term steroids. Goodness knows why he wants me to see an orthopaedic surgeon, he said perhaps I could see a rheumie after that when I questioned it! He is the fifth different GP I have seen since being diagnosed. They keep leaving.  None of them seem to have a clue about PMR. 
  • iellen32
    iellen32 track

    Posted

    Hi Track - our main problem besides our illness by itself + symptoms is the quick tapering of the steroid whatever us the one we have been taking. I have GCA and I am on Pred.

    Our Rhyeumatologists do the tapering wrongly too fast and the result is a disaster- flare ups, pains, etc.

    I am going through another flare up since I followed my doc advice - after saying I had learned the lesson on that matter(!) going abruptally from Pred 20MG to - 10mg .

    Not only couldn't do it because it affectated my vision but I had to increase the amount of the Pred to the level is comfortable.

    Wish you all the very best and the expected outcome.

    🍀

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