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Polymyalgia Rheumatica since September 2017.

Posted , 9 users are following.

rosemary83494
rosemary83494

My PMR seems to have taken a different route to people I read about on here so I thought I would tell the story of how I got to this point. I had been feeling tightness at the back of my neck just below the skull for several weeks, mostly on the left hand side. In August 2017 I developed a very bad virus, and at the same time something seems to have released the tightness in my neck until over a course of about three weeks the pain became unbearable, and I was having to actually lift my head off the pillow in the mornings to get out of bed. My legs felt as if they were about to give way when walking, and I gradually felt quite ill and barely able to walk at all. I had had a blood test in August for another problem and my CRP levels had been below 10, but when the Doctor sent me for a blood test when I was feeling so ill this had risen to122. The Doctor phoned me and asked me to come straight in to see her, and I was put on 15mg Prednisolone, which did not sort it, so had to go up to 20mg which was ok and the aches and pains went straight away. However I never had pains in my shoulders or upper arms at all as a lot of people seem to have, just this dreadful pain in my neck, and weakness in my legs. I had gradually got down to 6mg but have just had a flare up-the first since September last year, and I have had to go back up to 9mg. A recent blood test showed that my CRP had gone back up to 40. I have the added complication of Glaucoma, and the pressures have gone up from 14 to 24 so I was trying to sort out the eye problem, but guess I was coming down too quickly. I have only just found this site, and find it to be very helpful. When my levels are down again, I plan to try the DSNS way of trying to come down safely.

0 likes, 6 replies

6 Replies

  • EileenH
    EileenH rosemary83494

    Posted

    I assume you are on eyedrops for the glaucoma? They may need tweaking - some drops don't work as well as others. I wonder if you really actually had something more akin to GCA? It is possible:

    https://academic.oup.com/rheumatology/article/56/4/506/2631560

    At present though - since your CRP reflects your inflammation, you need to stay where you are until that CRP has come back down. And very good luck! Glad you have found us.

  • rosemary83494
    rosemary83494

    Posted

    Yes, I have been using various eye drops for 17 years now, and my check up is due tomorrow at the Eye Hospital, so hoping the pressures are coming down a bit. I do not get actual headaches at all, just the pain going from the bottom of my skull down the back of my neck when it all first started back in September. I have had a stiff neck with it again this time, but nothing like the original pain thank goodness. Thanks for your reply!
  • Royall
    Royall rosemary83494

    Posted

    Hello Rosemary. My polymyalgia started in my neck as well and also traveled up the back of my head  and over the top and stopped at my forehead , the pain felt like an envelope that came from my neck upwards. No pain in my arms or shoulders but pain in my legs and then I had stiffness in my bottom and the top of my legs. I started on 15mg and am now down to 9 mg but I am in a little pain after dropping from 10mg to 9 mg . 
  • amkoffee
    amkoffee rosemary83494

    Posted

    Well I can tell you that I am not the average PMR patient either when you consider where my pain points are. I started exactly a year before you did and I went to the doctor because my upper legs were hurting and I felt miserable. But I was already suffering from chronic lower back pain and had been for 11 years. So I don't think I would have noticed pain in my back and I didn't have any pain in my neck except occasionally. My forearms and hands are my biggest enemy and that is not listed in most definitions online of PMR but my doctor assured me that that is very possibly one of my PMR symptoms. And I can always tell if it's time for my prednisone because I start getting pain there. In fact I was in the hospital recently and I didn't get my prednisone with my other morning medication and I didn't notice it. When my arm started to hurt I knew exactly what it was.

    I think it's awesome that in the time you've had PMR you were able to get as low as you did. I've been at this what since September 2016 and at this time my prednisone dosage is lower than I have ever gotten to. I am at 9 mg of prednisone. I see saw up and down from 20 mg to 11 mg back up again. I think everyone's experience with PMR is difference and it sounds to me like even though you have differences you also have a lot of similarities.

  • Michdonn
    Michdonn rosemary83494

    Posted

    Rosemary, sorry to hear you have joined us on our PMR journey. After a bad flare I had to go to 30 mg to get relief. Slowly tapering from there currently on 7.5 tapering to 7 using DSNS method. Try and get PMR under control, then start try to get active. Do not rush your taper or your physical activity, go slow. Good luck on your journey, think positive and try to smile. I believe it helps! ☺️
    • rosemary83494
      rosemary83494 Michdonn

      Posted

      Thanks for all your replies. Good news at the Eye Hospital yesterday as my eye pressures for my glaucoma have come down from 24 to 16 and 17 so the new eye drops seem to be sorting out the steroid problem. Aches and pains have gone at 9 mg so upwards and onwards once my blood test levels come down again from 40.
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