1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

just going to start steriod tomorrow

Posted , 6 users are following.

Ronnie_1234
Ronnie_1234

hi have been having joint and muscle pain since April. thought it was training pain for the race of life but not got no better so had ESR done which was only 25 but my wonderful gp feels that it is PMR so doing steriods 15mg for one week then blood test and stay on tablets until tis result and then a plan to reduce.

just wondering if anyone has do a different diet or which excerise is best as i am thinking of doing aqua aerobics and swimming 

would love to hear anyone thoughts

thanks 

ronnie 123 x

 

0 likes, 13 replies

13 Replies

  • Michdonn
    Michdonn Ronnie_1234

    Posted

    Ronnie 1234, welcome to the PMR journey. If it is PMR Predinisone will reduce the stiffness and pain and ESR will be lower. I am a walker but believe water sports would be good. I also believe diet is very important, try to avoid food that cause inflammation, check your diet and then check those items on the internet. I smiling on my journey believe it helps! 🙂

    • Ronnie_1234
      Ronnie_1234 Michdonn

      Posted

      Many thanks

      Another journey in my life just when I thought the 50 's was the new 40's x

    • Michdonn
      Michdonn Ronnie_1234

      Posted

      Yes, Ronnie 1234, but life still goes on. Last winter while on Pred, I worked all winter as a ski instructor. I never could have done that without the Pred. I was hoping to ride my road bike this summer, but my balance is NG. So I am walking trying to stay active and in shape for skiing this winter. Now also do exercises to improve my balance, so life goes on and I have a smile on my face, think what it would be without the Pred. SMILING! 🙂

  • ptolemy
    ptolemy Ronnie_1234

    Posted

    Hi Ronnie, if you find that the steroids do not work over a week or so, it is usually a fairly miraculous change in pain levels when you take them if it is PMR, you should be able to just stop after such a short period of time with no need to taper. Do other pain killers help at all?
    • Ronnie_1234
      Ronnie_1234 ptolemy

      Posted

      Yes take paracetamol in the morning and sometimes at night

      Or when it's bad

    • ptolemy
      ptolemy Ronnie_1234

      Posted

      Hi Ronnie, if paracetamol helps the pain it is possibly likely that the pain being helped is not PMR. PMR really only is helped by pred. 
  • EileenH
    EileenH Ronnie_1234

    Posted

    I managed PMR for 5 years without pred - not out of choice I hasten to add - and the best days were those I started with an aquafit class AT MY LEVEL. You have to be careful to find an exercise that doesn't put too much strain onto compromised muscles or you will suffer from delayed onset muscle soreness (DOMS) that takes much longer to clear than you would expect. The pain of PMR wasn't improved much though, just the stiffness, and too much led to DOMS so I had to find the balance. I couldn't swim except life-saving backstroke - my shoulders and back just wouldn't have front-strokes.

    Although the Quick and Kirwan (we call it the Bristol) paper suggest the 1 week trial of 15mg as a "test" for PMR it may not be quite enough - the most recent recommendations say up to 25mg may be required. Larger bodies need more than smaller ones even though pred is not normally dosed by body weight.

    You will find our reading list - including links to the "Bristol paper" and the 2015 Recommendations here:

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

    • Ronnie_1234
      Ronnie_1234 EileenH

      Posted

      Hi many thanks for this

      Im just trying to get my head around how much or as little information there is and was not aware of DOMS. I feel my main concern is the weight that I will more than likely put on

      I do know that when i keep moving my joints feel better for a time but do pay for it the next day x

      Will keep you posted and hope things improve for u x

    • Ronnie_1234
      Ronnie_1234 EileenH

      Posted

      Many thanks for this

      Will make time to read the report

    • EileenH
      EileenH Ronnie_1234

      Posted

      Weight gain is NOT inevitable - everyone is different and some people even lose weight on pred! But cutting carbs drastically is a good way to approach the spectre of weight gain. It does work.
    • EileenH
      EileenH Ronnie_1234

      Posted

      Do your exercise/movement in small bites - not too much and then rest. You will soon find how much YOU can do, Doing 2 x 10 mins is the same as doing 1 x 20 mins but will almost certainly hurt less next day! Your muscles are unable to tell you you are doing too much so start with a very small amount of exercise and build up very slowly until you get to a point where you notice it next day. Then go back to the previous level for a while. Then try a bit more again.
  • mimi1950
    mimi1950 Ronnie_1234

    Posted

    I was inicially put on 10 mgs..it did help at first, but it wasn't sustainable, of course . Same thing happened at 15mgs, so I myself decided to go up to 20, having read an old post of Eileen's , I think, about how bigger people needed a bigger dose. At 20 mgs , I did feel, that almost immediate and amazing improvement that I had read about.

    In regards to diet, the one being recommended by many on here , considered anti-inflammatory, is a low carb diet, it helps avoid Prednisone induced weight gain and diabetis, among other benefits.

    Hope you have a smooth journey . I totally underestimated the morbidity of this condition. I felt like I had more energy than ever before, at times, and over did exercising and paid for it with DOMS which if you have PMR, is the pits! Last time I got DOMS I swam a few laps, I sat in the steam room and water jets...oh.. and I did a stretching class. Who works have known that stretching can cause DOMS, right? Well, it turns out even sitting passively in a pool full of water jets is taxing on our PMR - affected muscles. So be careful with your exercise routine.. take it slowly..DOMS is a horrible feeling ... the pain for me was much worse than the PMR..like having been run over by a Sherman tank..

Back to top

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.