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I was diagnosed with PMR a month ago...

Posted , 9 users are following.

ruby-ruth
ruby-ruth

I began having severe pain in my neck and shoulders in the evening thru the night and for several hours in the morning. At one point, I could barely walk and could not raise my legs to get into bed or move my arms at all. I was diagnosed with PMR and put on 20mg pred daily. After 10 days, I was reduced to 15mg, but I'm having pain again (not as debilitating, but I am awake most of the night unable to sleep). After reading some of the discussions, I am going to call my primary doctor as I think my dose dropped too much too soon. I have an appt with a rheumotologist in 5 days. I didn't realize how fatigue was overtaking me until the pain became so great at night. I'm so glad to read conversations and insight of people who are struggling with PMR - its just so strange to feel so normal during the day and be overtaken with such pain every evening/night/morning. Has anyone tried collagen hydrosylate? I started making smoothies and adding this and matcha green tea along with chai, coconut milk and yogurt. I'm hoping this will help with my symptoms.

0 likes, 13 replies

13 Replies

  • tina-uk_cwall
    tina-uk_cwall ruby-ruth

    Posted

    Hello ruby Ruth, sorry can't help you with smoothies but re the other query, you have pretty much answered your own question. The very first dose has such an important job because it needs to not only round up all the inflamation but it needs to keep it under control too and I think in your case this wasn't quite achieved. Look up the Bristol PMR plan and they suggest being on 15mgs for 6 weeks. In your case I think you should have been on 20mgs for 6 weeks. I stay on each dies for 6 weeks and now I'm at 5.5mgs after 2.6 years I only ever reduce by .5mgs using the dead slow and almost stop method. Good luck, regards, tina

     

  • diana21296
    diana21296 ruby-ruth

    Posted

    I had to start on 30mg with raised ESR and CRP levels and stayed there for 6 weeks even though the rheumatogist wanted me to drop down to 20mg after a week which was impossible for me.  Taking the full dose in the morning wouldn't last through the night and pain woke me up and I could hardly turn in bed, so I started to split the dose, 2/3rd in the morning and 1/3 early evening.  Steroids make me dozy so had no trouble sleeping once the night pain was under control.  This worked for me and have slept pretty well ever since.  My GP hadn't heard of splitting the dose which I got from this helpful forum, and she has taken it on board. This advise really saved me.  I am now on 15mg after 5.5 months and getting my life back.         Good luck.
  • maid_mariane
    maid_mariane ruby-ruth

    Posted

    Hi ruby

    I was first put on 15mg and within the week i was back to GP and put on 20 to get it under control. I got into the rumi quite fast due to daily migraines but not GCA but i started splitting my dose to 15mg am & 5mg at 3pm.

    My 1st reduction was after stabalizing in 8 weeks to 17.5mg tappering over 8 weeks and i had a hard time. I needed to stabilize again for 8weeks again and now only dropping by 0.5mg over 8weeks so slower than the dead slow. We are each different however know your body. I suffer from most of the side effects so know these side effects including blood pressure. Knowledge is our power in controlling this disease and how Dr's try to put things over us.

    This forum is a god send and the wonderful advise and knowledge is precious and invaluable.

    Good luck. Mariane

  • FlipDover_Aust
    FlipDover_Aust ruby-ruth

    Posted

    HI ruby-ruth, welcome to the PMR club (not!)

    Agree with the others, sounds like you need the 20mg for a bit longer to get your inflammation/pain down. I was different to most people here as I started on 50mg and dropped to 25mg over a few weeks, then sat at 20mg for a couple of months. It certainly got the pain under control.

    What the pred won't do, however, is deal with the fatigue. It may also disrupt your sleep at night - so if it's not the pain it could be the pred waking you up!

    If you are feeling 'normal' during the day you are doing really well!

     

  • EileenH
    EileenH ruby-ruth

    Posted

    In case you haven't already seen the link here it is again

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

    and in this thread you will find first a post with a lot of links to inforation - including the Bristol paper that Tina mentioned. In addition, in the replies is a very slow reduction plan, currently in use by a clinical research study in the north of England and which has been used by many patients successfully to reduce with a minimum of problems - no steroid withdrawal shock or missing the right dose you are looking for: the lowest dose that will manage the symptoms as well as the starting dose did. 

    However - it is important to get all the symptoms and, if it applies, the ESR and cRP level under control before you start to reduce at all. Ten days is rarely enough for that. The starting dose should generally be used for about 4 to 6 weeks - but it may take longer. The more effectively you start, the better things seem later down the journey.

    It sounds as if too you may be doing too much when you feel well - during the morning - and the payback is coming at night. The pred is just managing the inflammation, it doesn't change the underlying cause of the symptoms we call PMR. an autoimmune disorder that makes your immune system attack your body by mistake. That means your muscles remain intolerant of acute exercise and you have to do your part by pacing yourself. I'm about to post on 2 resources about pacing but it will take a bit because it will have links so will be captured for moderation - I hope it will be allowed though. It's already on the other PMR forums in the UK.

    As someone has already said, since the effect of pred lasts for 12-36 hours depending on the person, it may help to split the dose as about 2/3 in the morning and 1/3 at night to deal with the overnight development of pain and stiffness. New inflammatory substances are shed in the body every morning about 4.30am so the earlier you can take the pred the sooner you will feel better during the day. A study showed the best time to take pred to avoid morning pain and stiffness is 2am - and I do know people who set their arlarm to do it!

    I don't know if what you mention has been tried - but most of us between us have tried a lot of dietary things and few help. Adding antiinflammatory foods such as oily fish, garlic and turmeric to cooking seems to be useful but never replaces pred and doesn't help everyone. Cutting carbs seems to help avoid weight gain with pred and even lose weight as well as the risk of developing diabetes.

  • ruby-ruth
    ruby-ruth

    Posted

    I am on a taper (started at 20mg and I'm down to 5mg per day). I have had numbness in my quadricept muscle (top femor) when I am in certain positions. I've never had this before, is this because of the PMR?

     

    • EileenH
      EileenH ruby-ruth

      Posted

      Not something I have ever heard anyone complain of. Have you any other signs of nerve problems?
    • maid_mariane
      maid_mariane EileenH

      Posted

      I find every time I tapper I get new symptoms and this last time I had sever left shoulder pain that I couldn't live with and the rest of the left arm mainly in the hands numb. Like your hands are asleep.

      I started going back to my chiropractor and he has eliminated the shoulder pain and my numbness is getting better. Mind you I've finished my tapper and now in.my 3-4week level off before I consider another tapper.

    • EileenH
      EileenH maid_mariane

      Posted

      How strange that a taper should trigger a nerve entrapment problem - since I assume that may have been what it was. I've had ulnar nerve entrapment in the shoulder in the past - mainly a postural thing I think.

    • maid_mariane
      maid_mariane EileenH

      Posted

      It could have been coincidental but my GCA buddy here has also suffered from arm numbness. As i said now that I'm stabilizing my numbness is going away but my chiropractor has also been working on my inflammation with acupuncture and it seems to help.

    • ruby-ruth
      ruby-ruth EileenH

      Posted

      No other symptoms - I'm thinking it might be a nerve in my lower back issue.

       

    • ruby-ruth
      ruby-ruth maid_mariane

      Posted

      the taper process is a strange thing. Going from 6mg to 5mg was a big deal! My body didn't like it at all. I understand all of the comments stating that primary physicians generally don't know how to taper PMR patients - my rheumatologist has been great. On my last visit I met with his nurse practicioner and she was very helpful on what to expect from here on out. I'm going to start aqua therapy to gain muscle strength back, but she told me it might take up to one year to accomplish that. I've learned to pace myself (for the most part) and, like most of the people I've read about on this forum, modify life accordingly. I really appreciate the comments and suggestions I've read - it sure is helpful!

       

    • EileenH
      EileenH ruby-ruth

      Posted

      That is what I was thinking too - if it is myofascial pain syndrome leading to spasmed muscles and nerve irritation in the lower back then that would fit. Except usually it is pain in the quads and down the side of the knee rather than numbness.  I find the MPS can be quite good at higher doses of pred but re-emerges as I reduce. I struggled getting from 10 to 9mg a couple of months ago - my GP did some needling on my back muscles and it improved dramatically and I've got to 8mg now. 

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