New to Polymyalgia Rheumatica

Posted , 12 users are following.

I have been having a very sore, stiff right shoulder and groin pain for around 3 months now. I am now at the stage of just having had a blood test and it suggests PMR. I have been coping (just!!) on Naproxen but still struggling. I assumed that the pain in my groin wasn't linked at all to my right shoulder pain. The groin issue started when I power walked on the treadmill for arond 35 minutes and had tenderness in the pubic bone area for several weeks. This seemed to spread to my groin and in particular the adductor muscle right at the top of my leg into my groin. I can press on it and it is so sore. As far as my shoulder is concerned I just need to lightly tap it and the pain is bad. Are these typical sysmptoms of PMR? I genuinely feel like I have been going mad with the pain. I am now on 15mg of Prednisone a day as an introduction which is getting reviewed in a few days - I have only been on it for 3 days so far. I am trying to cut back on the Naproxen and for the first day really though the steroids were a miracle cure as the pain subsided massively. It is still sore again in the morning though and if I dont take one Naproxen in the morning tends to be sore during the day. Should I be taking Naproxen as well as Prednisone? When should the steroids kick in? Is the dose of 15mg reasonable?

Sorry for the ramblings as I am very new to this and to this level of pain.

Would love to hear about your experiences.

PS. I am 48 years old and historially have had hip misalignment problems for the last 25 years which has been dealt with by a chiropractor (that may or not be relevant!!)

0 likes, 38 replies

38 Replies

Next
  • Posted

    The fact you have got "miracle" relief with the pred does suggest it could be PMR and that the pred has "kicked in" - but 15mg is the bottom end of the range of doses to start with. That just manages the inflammation and hip and shoulder bursitis will take rather longer than the muscles to improve. Pred doesn't cure PMR, it just improves your quality of life until the real cause of the symptoms has burned out and gone into remission - which tends to be anything from 2 to 6 years for 75% of patients. 

    And YOU have to do your bit - the pred only manages inflammation, you need to adjust your life style a bit to accomodate the PMR as your muscles remain intolerant of acute exercise.

    You won't get 100% relief unless you are very very lucky, anything better than 70% is acceptable and reasonable. You need to stay at 15mg for at least a month - and then review your status. Unless your GP decides to try 20mg - which obviously should work faster! Either way, no reducing until your symptoms are stable even if not entirely gone.

    Taking NSAIDs with pred is not generally recommended though it is claimed Naproxen is better than most for gastric irritation - less isn't none though. But pred is your pain killer in PMR, ordinary painkillers don't help most of us.

    This is our "reading list", all put together as a post:

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

    Have a good root around and then come and ask specific questions - plenty of people to answer them.

    • Posted

      Thank you! I did have a really good first day after taking the Prednisone to the point I could put my socks on without having to sit down and without pain! I managed to go on a long dog walk yesterday but for the last two days pain in shoulder and groin still bad in the morning so resorted to Naproxen again. Would be interested to know when others have found that Prednisone kicks in and relieves symptoms without the need for further pain relief?
  • Posted

    The pain & stiffness of PMR can be unreal. And, like you I was amazed the the prednisone helped so fast. I'm finding that the areas of pain are different with everyone I talk to. As much as I hate the prednisone, I am in horrible pain with stiffness without I.

    Good luck and I hope it gets better.

    As for taking the naproxen with pred, I'm not sure. I don't take anything with it.

    • Posted

      Thank you for your reply. How long did it take for the Prednisone to help with your symptoms. It helped with me during the day but pain and stiffness is still bad in the morning. I have only had three days on Prednisone so far though.
    • Posted

      Within the first 3 days. I started on a high dose, 50 mg and tapered down to 10. This seems to keep symptoms at bay. I've tried to stop it all together, but that's not happening right now.

  • Posted

    Hi Joanne, welcome to this site where you will find a great community to accompany you on this unwanted journey.  

    It took about three days but I was completely pain free all the time I was at 15 mg.  This continuted until 9 mg, and since then, although I slowed my tapering down to truly dead slow I've experienced minor pain. My best time of day is from a couple of hours after taking pred (around 7:30 am) through to the end of the day, so it has worn off somewhat by the morning, especially on my current vanishingly small dose (2 mg) and I do not take any other painkiller specifically for PMR.  Aspirin taken for headache does help the "niggles" but I think it risky to take any NSAID unless needed occasionally for something like a headache, not for PMR.  If PMR is not controlled by pred either the dose is too low or one is doing too much and not allowing healing to occur

    Pred is metabolised at different rates by different people and it's possible you will find a different schedule for taking it more helpful.  As I said, my standard early morning dose works for me, but many people seem to find that taking it much earlier with perhaps a little tub of yoghurt to protect the stomach, results in a more comfortable day.  

    Give your 15 mg plenty of time to work, and as Eileen says reduce very slowly when you do start to taper.  You'll be more likely to achieve success in getting to the lowest dose which controls your symptoms if you take it really slowly.  In my case I was able to reduce relatively quickly at first, and from 9 to 4 still able to drop by 1 mg per month or six weeks, although by .5 mg a time, but since then, a year now, it's been much slower - a whole year to drop by 2 mg!  

  • Posted

    Hi, Joanne:  A couple of things struck me about your description of your pain. I think PMR typically affects both sides of the body about equally so having pain only in the right shoulder sounds unusual.  Also, my shoulders (actually upper arm) hurt when I raised the arm, rather than being sensitive to touch.

    I have had pain in my right hip for a year which I think is separate from the PMR. It hurts right in the joint to bear weight, take weight off it, raise my right arm, look to the left, so I think a nerve is being pinched!  I have massage therapy and the therapist found that the attachment points of the quadriceps are incredibly tender.

    If I increase my dose of prednisone for a few days, it relieves the hip pain, but that only suggests that I have inflamation in the hip, not specifically PMR.

    I suspect your hip pain may be related more to the misalignment which throws off the stresses on the muscles, especially since it started after a specific incident of exercise. Your doctor, chiropractor, a good massage therapist, or a good physical therapist should get to the root of this.  

    How great would it be if the treatment was rest and icing, rather than years of pain and steroids!!  Best of luck!

    • Posted

      Thank you for your reply. I have been seeing a chiropractor for the past 13 years or so. When I end to see her about my groin pain she did initially think it was linked to the hip misalignment but she thought that whatever was causing the groin pain lead to the hip being pulled out of alignment not the other way round which is what I thought at first. I had her confused so went to see a consultant who has given me an MRI - I will get these results this Thursday. Meanwhile I went to see my Gp about the shoulder pain - I went for an ultrasound which just showed some increased fluid movement, potentially inflammation and/or synovitis. Then I was referred for a blood test as a result of the ultrasound test and this lead to the diagnosis of possibly PMR. I guess it hasn't been 100% diagnosed but most of the forums I have read so far sound like my symptoms, apart from, as you said the fact only one of my shoulders is sore. Both sides of the groin are though, but one more than the oyher. Confused........?!? x

    • Posted

      From your description I would suspect that the shoulder pain is more of a soft tissue injury ...perhaps rotator cuff or tendinitis ...  . there is a wonderful booklet written by robin mckenzie called "treat your own shoulder" which gives proven self treatment exercises - these are from the world of physical therapy .  I have tried these and I give them to my clients too and they are very effective.   The booklet is part of a 3 booklet series called treat your own back and treat your own neck.  They can be ordered from amazon or from robin mckenzie worldwide. (I don't have any connection to the author nor the publisher! ). Hope you feel better soon

       

    • Posted

      Mine also started in the one shoulder did physio for about a month twice a week did nothing then when it started in the other shoulder went back to dr told them something was very wrong and that is when the new blood test showed it was PMR and put on prendisone both are better now down to 7mg a day 
    • Posted

      Good luck, come down slowly, I am going to come down slowly, 1 mg/ 2 months under 10 mg.
  • Posted

    My experience is NSAIDs do nothing for pmr and the right dose of prednisone is like a miracle drug. Six years ago I had my first case of pmr. I ached all over predominately shoulders and hips and was as weak as a kitten. For six months the rheumatoligists told me the pain was all in my head, I had rheumatiod arthritis, I had Lupis, I had Lime Disease, I had Oseteo Arthritis. Finally they thought to try prednisone even though my blood markers did not indicate pmr. I went to the pharmacy walking like Quasimoto the bell wringer, I was in so much pain. Before I left the building I popped a 60 mg prednisone and proceeded to the parking lot. As I walked to the car something strange was going on. It felt the chill in the air was going away. My hips hurt less and I could move my shoulders without stabbing pain. My stride became longer and I was getting up-right instead of hunched over. When I opened the car door my shoulders felt fine. I stood outside the car checking my body parts.  In less than five minute walk to the parking lot PREDNISONE had removed my symptoms
    • Posted

      wow 60mg that would work fast how long where you on that high dosage I started at 15mg and did take awhile before effective 
    • Posted

      It can't work until it has been absorbed into the bloodstream - and that takes at least an hour.

    • Posted

      I was on 60 mg for two days:

                         60,60,50,50,40,40,30,30,20,20 and then stayed at 10 for a month.

       

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.