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PMR attack of the wrists.

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MaggiGrace
MaggiGrace

I have had classic PMR symptoms (shoulders/upper arms/hips) and was diagnosed on March 2015... I am now reduced to 6MG pred daily.  

Have for the past two weeks or so had SEVERE wrist pain... not sure if it is pred withdrawal or PMR.   

Anyone else have PMR pain hit their wrists?   Cannot stand to bend them... Cannot remove a lid from a jar, etc.    Gets better as the day wears on.  Worse in the night/early morning.  

0 likes, 37 replies

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  • Anhaga
    Anhaga MaggiGrace

    Posted

    Reading all the replies to your question, I have a new question - would most of you attribute the symptoms to PMR itself, or to steroid withdrawal?
    • EileenH
      EileenH Anhaga

      Posted

      Sorry Anhaga - I don't quite understand what you mean. 

      If you reduce the steroid dose in too big steps you are likely to suffer discomfort from that alone.It will generally improve over a period of time as your body gets used to the new dose. 

      If you reduce the pred dose to too low a level the symptoms we call PMR will flare again as the inflammation due to the underlying autoimmune disorder gets out of control. In this case they will get worse over time.

      They can be very similar - and can easily be mistaken for one another. You don't know which it is and the knee jerk reaction is to return to the higher dose. That is the reason we advocate the very slow reduction - it doesn't have to be slow in terms of a long time, the important aspect is to reduce in small steps, preferably spread over a few weeks, to minimise the risk of withdrawal pain because the body hasn't as much to get used to - and at the same time identify the right maintenance dose more accurately. If you reduce in large steps you might be fine at 10mg but have a flare at 7.5mg - but if you go at 0.5mg at a time you may find that 8mg is also enough.

  • EileenH
    EileenH MaggiGrace

    Posted

    PMR caused me a lot of pain in wrists, base of my thumbs, hands and feet. It was put down to RSI originally but it was almost certainly tendonitis/synovitis as part of the PMR. After about 5 or 6 months at rather higher doses than you are at now it resolved. Tendons and joints don't respond as quickly to oral pred as muscles do since their blood supply is very poor - the pred "leaks" into the fluid surrounding them and eventually the inflammation fades. For a long time it was that that would flare up if I tried to reduce too far. Many doctors deny that hands and feet can be involved in PMR but a study in Leeds last year found they definitely are. 

    Someone has mentioned that there are a lot of people at present who seem to have reduced very fast -  theoretically, if the long term management dose is going to be quite low, you should be able to reduce down to that quickly without problems. However, if there is a lot of existing inflammation in tendons and joints you may find that is what flares first and that remaining at a slightly higher dose for some time might do the trick. 

    In early PMR I never could remove a lid from a jar - hopeless even with aids! If I tried it left me in pain for days so it just wasn't worth it. Holding the vacuum hose was (and still is) difficult. At the start I found a wrist brace helped a lot to rest the painful bits and that is something that might be worth a whirl.

    BUT - and this is a big but: was the doctor 100% certain it is PMR you have? Could it have been a flare of something called palindromic rheumatism? This tends to appear and disappear with the joints appearing totally normal between episodes. It also would respond well to pred, disappear for a while, allowing you to reduce very quickly but then could reappear. It isn't always in the same joint either, it can wander around the body, and would also be accompanied by morning stiffness.

    Just a thought.

    • Padada
      Padada EileenH

      Posted

      I had those very symptoms of palindromic rheumatism for several years before PMR symptoms started suddenly in November of 2014.  Here is what I experienced:  pain and swelling in my right big toe that came and went; pain and swelling in my right thumb that came and went, also pain in my left hip joint that again came and went at various intervals of time.  No real pattern and not all the joints were involved at the same time.

      I suspected gout in my toe and had the blood work done that ruled out gout ,  Then I vistied a gynecologist because I thought the deep hip pain might be related to cyst on ovary or uterus - not so.  I never had any accompanying redness of toe or thumb joint that was obvious. 

      I didn't pay much more attention to the infrequent, traveling pain, but now wonder if it wasn't palindromic rheumatism causing it? 

      Now, however, the pain is definately different and of the PMR nature.  Typical shoulder and neck pain, along with stiffness and pain in both hips which prednisone greatly reduces.  I would also like to share that the PMR pain came on suddenly one morning when I woke up two weeks after a very stressful root canal. 

      I am sharing this so that we can compare experiences.  To me, this PMR disease is very mysterious and manifests differently in every person.  Also, the prednisone taper seems to be different for everyone. 

      Bottom line - no doctor ever mentioned palindromic rheumatism or any other reason for my traveling pain.  I just forgot about it when the pains would disappear but I knew it was not normal or good.  Now I seem to havePMR and constant pain (although much reduced with pred.)  It is encouraging to know that some of you have actually gone into remission and do not have the pain and do not take prednisone any more.  Thanks to all who have shared their victory. 

       

    • constance.de
      constance.de EileenH

      Posted

      Hi Eileen.  My doctor mentioned 'migratory arthritis' when I explained some weird pains I was having.  Pain in shoulder blade/wrist/toe/ankle - VERY painful, but the pain disappeared after a few days, only to flare up in some other part at different times.  Is this the same as palindromic rheumatism?  Thank goodness I haven't had an 'attack' for several weeks.  Does it just disappear?
    • EileenH
      EileenH constance.de

      Posted

      Probably - a rose by any other name!

      Really not sure - one friend of mine has RA and it started as this migratory form 30 years ago and then disappeared for a long time before returning much later in life.

    • MaggiGrace
      MaggiGrace EileenH

      Posted

      Hi Eileen,

      i thought I had responded to you but I think I got interrupted and closed my iPad so it didn't save.

      Rheumy is 100% certain I have PMR. I had all the classic symptoms and my blood work showed the inflammation... She also ordered an MRI with contrast which showed significant inflammation in my shoulders.  

      I I think one of the reasons I have been able to reduce the oral pred more quickly is the result of the long-acting cortisone injections I initially received in each shoulder and one knee.  The results were miraculous within about 48 hours.  

      My Rheumy also tested me for virtually every other possibility under the sun. Lyme, lupus, RA, and even STDs.  All were negative.  

      I continue to have a moderate but tolerable amount of ongoing pain and stiffness.  I have chosen not to use a higher dose of oral pred due to a really bad reaction I had several years ago.  I'm managing and trying to go down every three-four weeks.  I did have to go back up to 7mg 4 weeks ago when my best friend collapsed from a brain aneurysm.  She remains in a coma and I am so sorrow filled by her still unresponsive condition.  

      I will try to get back to 6mg when some of this stress eases.  

      I am am hopeful for all who are stricken with up this miserable disease that a "better answer" will be found for treatment and cure.  

      MaggiGrace💕

    • EileenH
      EileenH MaggiGrace

      Posted

      7mg is what is called a "physiological dose", it's about the same as the body makes anyway so don't panic too much about reducing if you aren't up to it.

      Oh, definitely - if patients with severe shoulder or hip problems were started with a set of injections I'm sure they could manage wiwth far less oral pred. 

      I think you have been very lucky with your rheumy - she has done things really well and a lot of patients would do so much better with that sort of care. I wonder if she'd write an article about how she manages her PMR patients. The imaging she did should be standard - but it won't be in the UK for a long time.

      I do hope you friend improves -  miracles do happen.

  • Danrower
    Danrower MaggiGrace

    Posted

    Hi Maggi

    Yes, I could not open a water bottle pre-pred.

    I had significant wrist, hand, ankle and feet inflammation along with most other joints  during the 8 weeks of untreated PMR. The chair of a rheumatology dept at a nationally well respected hospital  was unsure whether it was Late Onset Rheumatoid, or PMR. 18 months later: it is PMR, and currently, I have swollen feet and ankles. Down to 6 mg pred/day. I balance the pain/swelling/inflamation levels with desire to reduce prednisone use. I agree with Eileen posts above. Wrist, hand, ankle and feet involvement is not uncommon. For me, it's the best indicator of my level of "general" inflammation. Additionally, I am sero-negative on ESR (sed rate) and CRP (C-reactive protein).

    Good luck

    Dan

    • angela43016
      angela43016 Danrower

      Posted

      Don't try and reduce too quickly, we all want to get off them but it's no good trying too fast. Good luck x
  • angela43016
    angela43016 MaggiGrace

    Posted

    Speak to your Rheumy, it might be that you are reducing too quickly x
  • MaggiGrace
    MaggiGrace

    Posted

    I'm back up to 8mg at the orders of my Rheumy.  

    My BFF passed away on Sunday after an unexpected and devastating illness.  I think the stress of her sudden illness / passing sent me back into a big flare.  

    Rheumy wants me to try MTX to help reduce.  Just had new blood work, and it's all within "normal" ranges.  

    Well then, why was I barely able to turn over in bed or walk to the bathroom ??!

    i hate this stupid disease on behalf of all of us who are afflicted.  

    Blessings and prayers to you all for a good day tomorrow.  💕

     

    • constance.de
      constance.de MaggiGrace

      Posted

      So sorry to hear about your friend.  Our thoughts go with you.

      Take care.  Constance 💕

    • EileenH
      EileenH MaggiGrace

      Posted

      So sorry to hear that and yes, you are probably correct about the effect it will have had on you. I was 17 when my father died of the same thing and I still remember the state I was in as a young healthy woman  - never mind my mother. The comfort to me was that he did die - I'm sure that sounds very strange and unfeeling - but a burst cerebral aneurysm ususally means devastating brain damage. Remember your friend as she was - she would never have been the same person and probably a total invalid.

      Just because your bloods are normal does not mean there is no new inflammation  as they often lag behind the symptoms. Many rhematologists' patients have the same problem - their doctor tells them how well they are according to the blood tests but they can barely crawl into the office!

      Thinking of you and her family,

  • renee39320
    renee39320 MaggiGrace

    Posted

    Your story is EXACTLY like mine! Diagnosed in March 2015, on 20 mg prednisone. I'm down to 7mg now, but did a stupid error this week. Instead of taking 5 mg in the morning and 2 mg at night, I erroneously put my 1 mg tablet in my pill box instead of the 5 mg! So, I was only taking 3 mg for three days before I discovered the error. Needless to say, I had a flare! This time, it started in my wrists and hands, affected my shoulders and started in my thighs. I corrected my dosage, but my wrists kill! It finally gets a little better by 2 pm! I don't know if I should increase to 8mg for a few weeks, or continue with my 7 mg and stay at that dose for 4-6 weeks. I had been decreasing by 1 mg every 3 weeks and it's been fine.
    • EileenH
      EileenH renee39320

      Posted

      You might even find 10mg for a few days is enough to get it all under control - and then you can go straight back to the 7mg where you were obviously happy.

      But from now - consider 1/2mg drops or spread it over a longer period, not just from one day to the next. No drop should be more than 10% of the current dose - that's 1mg at 10mg but from there on 1mg is more than 10% and climbing.

      There's a very slow reduction here (in the replies)

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

      which has helped a lot of people reduce further.

    • renee39320
      renee39320 EileenH

      Posted

      Thank you Eileen! I think I will continue with the 7 mg for a couple of more days. If it doesn't get better, I will up the dose! By this afternoon,I felt almost normal!
    • EileenH
      EileenH renee39320

      Posted

      So it sounds as if you don't need any more at all which is really good news - there wouldn't have been much accumulated inflammation to deal with so it should be OK.
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