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Questions about PMR

Posted , 16 users are following.

julia06380
julia06380

I am new to this group and asking quite a few questions for my husband. In the end of May, he started to experience pain in his shoulders and groin. It was so uncomfortable that he couldn't sleep at all. This has lead to 5 general practice doctors visits, 2 MRIs, an X-Ray, an EMG, an orthopedic doctor visit and 2 different blood work ups. Since we are now in the end of July, his symptoms have only increased. He now has pain in his shoulders, elbows, hands, knees, and ankles. His hands are so swollen that they look like he is wearing boxing gloves!! So far, his doctors have prescribed opioids which have done little to relieve his pain. He is so miserable that he cannot sleep at all. I can see how frustrated and upset he is by not being able to handle everyday tasks. Simply taking off the toothpaste lids hurts him so badly. This morning he received results from his blood work that stated he had elevated CPR and ESR levels. We are currently trying to get into a rheumatologist, but I was wondering if any of you have any any luck with any topicals or over the counter treatments to bring any relief while we wait? Any advice would be appreciated!

1 like, 31 replies

31 Replies

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  • ptolemy
    ptolemy julia06380

    Posted

    Would your doctor prescribe steroids for your husband to try for a week?  If they work, say around 15-20mg, it may point to PMR. If not he can just stop after such a short time. Steroids are really the only thing that will alleviate the pain from PMR and in my case worked like magic. If other pain killers help the pain, what they are helping is probably not PMR. I could hardly move just before diagnosis, I had been told it was just a virus. In the end I paid to go privately to a rheumatologist who diagnosed PMR in about five seconds. 
    • julia06380
      julia06380 ptolemy

      Posted

      He has another appointment with his GP on Friday so after reading everything on here, we are going to ask and pray that they say yes! Yes, they keep saying it's a virus!

    • ptolemy
      ptolemy julia06380

      Posted

      Good luck with his GP. Just a warning you may have quite a fight as some doctors seem paranoid about prescribing steroids, you may be lucky though and have a sensible one. 
    • constance.de
      constance.de julia06380

      Posted

      Hi Julia.  Our expert (Eileen) will no doubt be along soon and she will give you links to the Mayo Clinic report on PMR (which it certainly seems to be what your husband has).

      Good luck!  

  • Twopies
    Twopies julia06380

    Posted

    I don’t know where you live, but could you get him to ER or a walk in clinic?  My gp (I’m in US) kept telling me to live with the pain...then when I was almost bedridden my husband finally took me to a walk in clinic where the knowledgeable nurse practitioner figured it out.  My gp got me started on prednisone right away (after the nurse practitioner headed him in the right direction.)

    Rheumies are sparse where I am, lots of gps treat pmr (if indeed that’s what your husband has).  I saw the rheumy once; he said I could choose between him and my gp; he didn’t care.  I chose my gp.

    Sounds like your husband needs some help asap.  If it is pmr, only prednisone will help and the sooner the better.  Best wishes—hope you let us know the results.

    • julia06380
      julia06380 Twopies

      Posted

      We are located in the US. We basically keep being told its virus and like you said, just to live with it. He has an appt with his GP on Friday so after reading everything on here, we are definitely going to ask about steroids and hopefully get him started on that ASAP. 

      Thank you for your response and seriously this community is amazing!

  • VickieS
    VickieS julia06380

    Posted

    Months before I was diagnosed, and before the shoulder pain started, most of my pain was in my legs, then a horrible burning pain started in my groin on both sides to the point I could hardly walk and couldn't even stand to have any fabric touch that area. I ended up in urgent care and they had no clue what was wrong with me but put me on a Medrol dose pack and within hours, the pain started to dissipate. I had tried opioids and NSAIDS before going to urgent care, and neither helped at all. At no point in my 4 yr journey with PMR has any other kind of painkiller helped at all, only prednisone. I hope your GP will try him on prednisone to see if that helps him. Good luck!

  • MariGrace
    MariGrace julia06380

    Posted

    Reading your post hurts me.  My experience was similar to your husbands.  If you can take some information about PMR to his doctor and ask him to try 20 mg of prednisone, that would be a good starting point.

    (The rheumatologist later went to increased the pred. to 60 and I've been able to reduce to 10 over 16 months.  Am not going down anymore and this might be the number  for a long time.  Prednisone is my friend.  It is no longer my enemy.  It allows me to walk and move.  This is a good thing.  I've embraced it and, if someday  it can be reduced, that will be good, too.

    ** Going  to the ER before my family doctor's visit was a disaster and I got NO help.  I asked them to check my sed rate due to my significant history of autoimmune diseases.  They did not.  One nurse ?? put her hands on my shoulders and said, "Honey, the ER is for sick people, people we can admit to the hospital."  Huh? My family  doctor TOLD me to go there because my pain had increased to such a severe level. 

    If you choose to take your husband to the ER - maybe call ahead and ask if they do the testing for PMR?

      

    I had to wait for help for three more days until my doctor apt and she started me on 20mg of pred. Within an hour and a few more minutes, I experienced a miracle!!  Relief was amazing.

    **  The rheumatologist and his wonderful PA have both said nothing works for PMR but prednisone.  They did give me  methatrexate for prednisone reduction but it was a total disaster.  

    ** Walk in clinics - have not been good experiences.

    Arm yourself with articles and information and we'll be out here sending good thoughts that someone will listen.  

    We truly can identify and understand the frustration.  If my doctor had not figured it all out  I would be in a nursing home right now because it was impossible to do anything for myself. 

    Proper care can help.  Keep the hope.  We are thinking of your husband and of you!

    MariGrace

     

    • julia06380
      julia06380 MariGrace

      Posted

      Thank you so much for the response. Everything you all have said has been very helpful. He has an appointment on Friday with his GP, so we plan on talking to him about starting steroids. I have already starting printing out articles to bring to the Dr. It looks like his rheumatology appt will be next week, so I am hoping we get some form of answer soon.

      I am amazed that so many of you live with this pain for so long! It is so frustrating to not have these doctors listen and just assume that it's going to go away. So many health care "professionals" have told him that there is nothing they can do and he isn't sick! Others are saying its just a virus and he'll be fine. 

      Thank you again, I'm so happy to have stumbled upon this forum because your posts have given me so much information!

  • kate50809
    kate50809 julia06380

    Posted

    I really feel for your husband. I was in similar pain for 8 weeks, sleeping for little more than an hour at a stretch and unable to lie in bed because of the pain in my hips and shoulders. It was only when my hands siezed up and the blood tests showed the  inflammation markers were raised I was finally given some steroid  (Prednisolone).  This worked like magic.  Opioids do not touch PMR pain.

    If your GP could be persuaded to give you husband a short course of Pred and it worked he would know pretty much for sure if PMR was the correct diagnoses.

    There are others who have been on this site a lot longer than me who I hope you will hear from, but there seems to be no alternative to steroids for PMR

    Hope you get something sorted soon

    All the best

    Ktea

    • julia06380
      julia06380 kate50809

      Posted

      Thank you for your response! We see his GP on Friday and after reading everything on here, we are going to ask about starting steroids. I have started saving and printing articles in the hopes to get someone to listen. Yes, the opioids have done absolutely nothing so he has stopped taking them. 
  • TheRaven
    TheRaven julia06380

    Posted

    Oh man, Julia there are a lot of us on the forum who are reading your post about your husband and are sadly saying "Lord but I've been there and done that!".  My journey started 2 years ago in July when I gradually went from 50-60 hours of physical work a week at my job down to virtually living in my recliner as the bed was too painful and getting maybe an hour of sleep a night.  Tylenol, Ibuprofen, opiods, nothing reduced the pain.  I was on a 2 month wait for a rheumy appt and finally emailed my GP ass't and begged her to run every test there was and heck with the cost as I couldn't wait that long to see the rheumy.  After 2 standard batteries of blood tests she suggested I take prednisone for a week and see if it helped in the first day or 2.  I rolled my eyes and said ok.  With a day it was almost like I'd been in a nightmare that was quickly fading.  I hope for your husband's sake that he can get relief soon, whether it's PMR or not.  If it's PMR we wish him the best and are here to lend a hand and shoulder.  PMR is life changing but it can be dealt with.  Most people, doctors and specialists included, don't understand because "WE LOOK FINE" once we're on Prednisone.  I wish your husband the best and hope you can get someone/anyone to listen or at least give you a prescription for prednisone for a week.  As my GP ass't said "In your condition you've got nothing to lose by trying it for a week".  Truer words were never spoken.

  • EileenH
    EileenH julia06380

    Posted

    Your GP needs a stiff talking to! There is no reason not to TRY a moderate dose of pred to see if works. 

    "It's a virus" - after 3 months that needs proper investigation - especially if he is getting worse. 

    And if he doesn't know about PMR or is scared of using low-moderate doses of steroids here is some reading for him:

    http://www.rcpe.ac.uk/sites/default/files/quick.pdf

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    • julia06380
      julia06380 EileenH

      Posted

      Thank you for the links, I will definitely be printing those out and taking them with us tomorrow. We are definitely asking him to at least try the steroid to see if it brings any relief. Thank you again, all of the input is so appreciated. 
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