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

How much prednisone to start with for polymyalgia rheumatica?

Posted , 11 users are following.

sandra28555
sandra28555

i have just been diagnosed with pmr and have been started on 20 mg. I haven't had relief so far. What can I expect?

0 likes, 26 replies

26 Replies

Next
  • whitefishbay
    whitefishbay sandra28555

    Posted

    I started on 20 mg on 29 March and had some relief within hours.  Now I am a bit stiff first thing but everything eases within an hour of taking prednisone.  You will get more expert replies shortly I bet but maybe you don't have PMR or maybe you need a stronger dose.  Best of luck.
  • maid_mariane
    maid_mariane sandra28555

    Posted

    Have you got any relief and how many days have you been on 20mg. I started on 15mg and within 1 week up to 20mg which really worked.
  • tavidu
    tavidu sandra28555

    Posted

    Hi Sandra. I started on 15mg a day two years ago and had to go up to 20mg after a few days. This still didn't give me much relief so my doctor advised me to go up to 25mg. This gave me 95% relief and I remained on this dose for 3 months. 2 years on and I am still on 13mg a day and reducing slowly. It takes time but we will all get there eventually and we have to accept a dose that gives us relief to start with. Good luck.

  • ann3035
    ann3035 sandra28555

    Posted

    Hi I was diagnosed with pmr 2 months ago and was put on 15mg it took 2 weeks before i felt any ease, so if you are on preds for longer and no ease definitley go back to doc as they should have kicked in by now.. hope you feel better soon
  • EileenH
    EileenH sandra28555

    Posted

    That's a fairly normal starting dose - how long have you been taking it though? I took 15mg at 10.15am and at 4pm walked down and back up stairs normally - not like a toddler, one step at a time. Others have had this "miracle" response too but it isn't uncommon to take up to a week to notice the big difference.

    However - if there isn't a noticeable improvement after a week to 10 days it may be an idea to try 25mg - this is in the latest international recommendations for managing PMR. But if that doesn't make a difference of 70% global improvement in symptoms then it has to be questioned whether the PMR symptoms are due to the cause we discuss here and investigations done to see if it is due to any of the other numerous causes such as RA or other autoimmune disorders.

  • elizabeth53956
    elizabeth53956 sandra28555

    Posted

    Hi Sandra. I'm new to this also, but I got immediate relief. I felt better the very first day, and I felt euphoric. But everyone doesn't have that same response.  I felt great as long as I was on the 20 mg. for the first two weeks, then also felt great for the next two weeks on 15 mg. I'm on 10 right now and I have more pain, and I'm about to go down to 5 which I'm not looking forward to.  I have not seen my rheumatologist yet, and won't see him until the 19th of the month, but more pain as I decreased, but still tolerable.  I was also told that if you don't get relief it might be the wrong diagnosis, but others know more about that than I do.  I was sleeping sitting up propped up with pillows on the couch because I lost control of my arms and legs. I was like a beached whale. Once down I could not turn at all. The first day on pred I was able to sleep in my own bed. I was not able to lift my  swollen legs, and the first day all swelling in my legs was gone. It was truly a miracle drug for me. That said, I don't look forward to being on it long term. So others can advise you about that. I was very discouraged, and so frightened. When I was diagnosed by a quick care physician after 5 months of no help I was so grateful I wanted to kiss the ground of the quick care doc who diagnosed me after my own doctor did not. I still have anger about that, and even though she and I talked about it, I still feel like I'm not getting support from her.  We really need help for these strange things that happen to our bodies, and when I talk to Sarah, or Lindsey and they sound like they have no clue about my questions, I lose confidence in the care. This site is amazing, and everything is tossed out there, and you can take what helps, and leave the rest. 
    • maid_mariane
      maid_mariane elizabeth53956

      Posted

      Hi Elizabeth

      You are dropping to fast that is why the oains are back. No more than 10% and use the dead slow method. I'm even slower i started at 20mg in sept 2015 and now at 17mg. I can only drop .5mg over 8weeks or my body feels it.

      Go back up or you will be in major trouble I'm surprised no one else commented.

    • tavidu
      tavidu elizabeth53956

      Posted

      Hi Elizabeth, you say you are going to drop from 10mg to 5mg soon, how long have you been on preds? This is too large a drop and could affect your adrenals. Talk to your doctor before you start dropping down.
    • EileenH
      EileenH elizabeth53956

      Posted

      Ellizabeth - you are looking for the lowest dose that gives you near enough the same result as the starting dose. You cannot reduce in 5mg steps to zero and stop - PMR is a chronic illness and requires pred for at least 2 years, more often than not longer. Every morning new inflammatory substances are shed in the body - that's why you are stiff and in pain again every morning until the pred works - and you need enough pred to manage that daily dose. 

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

      In the first post of this thread you will find a load of links for info - one is headed the "Bristol paper". Print it off and take it to your GP and ask them to read it and help you to reduce your pred dose in a similar way to what they recommend. Even using their method you may not manage to get to zero in 2 years - it all depends on YOUR PMR and how it proceeds. I've had it for 12 years and it has not gone into lasting remission yet, I've been on pred for 7 years, for a long time I got down to 4 or 5mg but it has flared again. But using this sort of plan you should be able to identify the lowest dose that you can live with. In the replies section is the "Dead slow" approach to reducing which for many people has allowed them to get to a lower dose and certainly with fewer flares or withdrawal pain. 

      If they won't cooperate - you do need a more helpful doctor. But continue on that path and you will be as bad as you were to start with and once you allow a major flare it is often even harder to get it under control. Don't let it get that far.

    • elizabeth53956
      elizabeth53956 tavidu

      Posted

      I'm starting to realize that.  I'm a newbie and I have to work through this process. I'm dancing as fast as I can, and learning new stuff every day. This is hard. I'm reading about all of the research that others had to do to get to where they are, and I'm a fighter, so I'll get there.
  • diana21296
    diana21296 sandra28555

    Posted

    I had high CRP and ESR bloods late December so I was started on 30mg where I remained for 6 wees before dropping to 25mg.  They tried to take me down to 20mg which was impossible for me.  I am now on 15mg but it's a struggle. It takes at least 3 hours for Pred to kick in with me but no experience is the same.             Good luck!
    • maid_mariane
      maid_mariane diana21296

      Posted

      Hi Diana

      Have you tried splitting your dose. I was like you and now i split my dose. I'm at 17mg so 12mg am and 5mg at 3pm. Keeps pain more manageable ad long as i don't over do it and better in the morning.

      Many of us do this. I can only reduce bt .5mg so i take it off the morning dose and leave the afternoon alone.

      Mariane

    • diana21296
      diana21296 maid_mariane

      Posted

      Yes I have been splitting the dose now for ages  having read about it on this forum.  10mg am and 5mg pm.  Sometimes up it by 1mg if I get bad back ache.
  • diana21296
    diana21296 sandra28555

    Posted

    Sorry, not 6 WEES, but 6 WEEKS!! Ha Ha!
    • EileenH
      EileenH diana21296

      Posted

      Oh I don't know - lots of people have that problem with pred too...
    • EileenH
      EileenH whitefishbay

      Posted

      It is more likely to be interstitial cystitis or irritable bladder syndrome than a real bacterial infection. And PMR itself can be the cause, not only the pred.

      However, some people may produce calcium grit if they are on calcium supplements and don't drink enough so their urine gets too concentrated. That is also very irritating to the urethra (the connection between the bladder and outside). If you have to travel or have a day where drinking plenty is going to be difficult - miss out one of the calcium tablets. That works for me.

    • sheila28713
      sheila28713 EileenH

      Posted

      Eileen,

      This is really good information to know about PMR sometimes causing interstitial cystitis. I had never had a UTI in my life and then got 3 within 6 months once I started on Prednisone. I had assumed it was brought on by taking Prednisone. There isnt much in the literature about this, but even close to 3 years later I've had microscopic blood in urinalysis. Recent Bladder and kidney ultrasound was normal.

      Sheila

    • sheila28713
      sheila28713 whitefishbay

      Posted

      Yes!! Glad to hear today from Eileen, our resident expert, that this was another PMR symtom.

      Sheila

    • EileenH
      EileenH sheila28713

      Posted

      After it was mentioned to one of the research groups in the UK they started asking patients presenting with PMR whether they had bladder problems. They did - so it isn't just my theory!
    • sheila28713
      sheila28713 EileenH

      Posted

      I sure wish I had known this a year ago when I went in for a urinalysis post antibiotics at my family doc walk in clinic. It showed moderate microscopic blood and the walk in doc was a real keener and was relentless in trying to figure out why I had this.

      Now I can just tell docs that interstitial cystitis is brought on by PMR!

      I am so grateful for the knowledge I have gained from this forum - this truly is info that we can't get elsewhere!

      Sheila

Back to top
Next

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.