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

How much Prednisone is enough?

Posted , 12 users are following.

Marla0415
Marla0415

Here I am with another questions for those of you who have been living with PMR long enough to have good practical advice.  I'd be lost had I not found this forum.    Where 15mg at one time relieved my pain  it no longer will so I am now on 20 mg daily.  I still wake up with stiffness all over my body, sometimes the flu-ish feeling too but I am not in the kind of pain where I can barely walk. The stiffness stays with me a good portion of the day unless I use pain medication. I feel the best toward evening then I go to bed and wake up again aching all over again.  It makes me wonder if I am taking enough Prednisone or if I still need to increase it?  If 70% improvement is a guideline then I'm probably there however I've also read that you need to be taking enough Prednisone to be effective.  Should I be free of ALL of the symptoms of the PMR while on a certain dose of Pred or does everyone out there live with a certain amount of symptoms that they just tolerate?  Oh to wake up feeling good one day.  That would be wonderful!!  Thanks to all for your sage advice. :-)  

1 like, 14 replies

14 Replies

  • tina-uk_cwall
    tina-uk_cwall Marla0415

    Posted

    Hello Marla, the maximum relief that each of us achieve is very personal. Eg, I receive pretty much 100% relief and so for me it was easier to tell when I suffered a flare.

    however, you say that the stiffness stays with you a good portion of the day unless you take pain medication. That indicates to me that this particular pain that responds to pain killers is not pmr pain because pmr pain only responds to preds, (anti inflammatory). So if I am right this pain is caused by something else.

    also you do not mention that you upped your dose from 15mgs to 20mgs because you had a flare only that where 15mgs worked it no longer does and even 20mgs is not doing its job.

    i would definately be tempted to visit my GP and request a referral. Perhaps a rheumatologist may come up either with a different treatment plan or another diagnosis instead or alongside the pmr. It is possible to have other painful conditions at the same time. All the best, tina

    • Marla0415
      Marla0415 tina-uk_cwall

      Posted

      Hi Tina. I'm sorry I didn't give enough information in that the reason I increased my dosage was because my RA dr wanted me to decrease the Pred from the 15mg she had put me on originally. By the time I got to 10mg I was suffering just like at the beginning and my inflammation markers were rising. Both my GP and Rheumy agreed I should go back to 15 but it didn't do the job this time and my Rheumy put me at 20mg. I do see her in a couple of weeks when she will check my blood levels again and we will discuss how to proceed. I don't seem to fit the "average" RA symptoms but I realize that doesn't always mean I don't have it too! Thanks for the reply to my post. It is appreciated. 
  • pauline36422
    pauline36422 Marla0415

    Posted

    yes i had 100% pain free.  right down to around 4%.  then  a couple of flares.now  down to3%  without  any sign of  flare will stay here for a couple of month   then go down another quater %  very slowly    but like tina says it could be more like a  gp visit,   so get your skates on girl    good luck xx

     

    • Marla0415
      Marla0415 pauline36422

      Posted

      Pauline. How great to be 100% pain free!  Hope you have success as you continue to reduce. One day I hope to be the same 😊
  • Handbrake
    Handbrake Marla0415

    Posted

    Morning Maria, pain free at 1mg so dropped to zero lasted a month before pain started increasingly creeping in so back on 2mg. Agree with Tina and Maria that your pain sounds like you warrant further investigation.
  • ptolemy
    ptolemy Marla0415

    Posted

    Pred only helps the pain it does not help the flu like symptoms, fatigue etc.
  • Daniel1143
    Daniel1143 Marla0415

    Posted

    I have found a little ibuprofen helps the pain.  I generally wake in the middle of the night and take two pills (200 mg).  I feel better in the morning.  Last night I did not and am flaring in the shoulders.  I weaned my way down from 20mg to 5mg of prednisone. Actually feel I am too low, but hesitate to increase.  Really want to get off this stuff.

    i read many comments that ibuprofen and naproxen do nothing for PMR.  Would be interested in others opinions.  They do help me with the aching, but I try to take them sparingly.

    • tina-uk_cwall
      tina-uk_cwall Daniel1143

      Posted

      Hello Daniel, yes, sparingly being the operative word. All warnings with preds clearly state that preds and ibuprofen are not good bed fellas. I was however prescribed ibuprofen when I damaged my back and although the GP prescribed them she did say that as soon as the pain was bearable STOP which I did.

      yes, we all want to get off the preds, but we must be sensible. Taking preds could give us 1 lot of side effects but taking 3 lots of drugs increases the side effects. So I say rake the preds at the level that is needed and safeguard yourself from any possible side effects, eg, take the preds with yogurt to protect the stomach. Take, vit d, calcium and magnesium to help,protect the bones. All the best, tina

    • Marla0415
      Marla0415 Daniel1143

      Posted

      Actually if I take ibuprofen it also helps me but I do try not to take it since the Pred itself is hard on the tummy. My GP said if I had to take it then I should be taking an acid reducer along with it. I called my morning symptoms "stiffness"  but "aching" might describe it too. 
    • Sheilamac_Fife
      Sheilamac_Fife Daniel1143

      Posted

      Sadly, you really  can't reduce and come off Pred whilst you still have inflammation going on. You risk a really big flare. Doses around 5mg are not doing you the same harm as 15 for example. I would certainly increase to where I was last properly comfortable and stabilise there for a week or two then very, very slowly start to come down again. Adding other dangerous drugs like Ibuprofen puts you at risk of other side effects. 

      Believe me, you are not alone wanting off Prednisolone but it truly is all we have and if we let it, it does a good job of making us comfortable until the illness goes into remission. 

      I worry about allowing the inflammation to continue unchecked. However, as others have said, you may have something else going on alongside the PMR.

  • snapperblue
    snapperblue Marla0415

    Posted

    Hi, Marla- It would help if you reviewed your history- how long ago you were diagnosed, what dose worked then, how long you were at 15 mg, what happened that made you increase the dose?  

    People answer the question of "how much pain relief is enough" differently.  I  reason that PMR pain is an indication of continued inflammation, so as long as you have any substantial pain, you have chronic inflammation. I think chronic inflammation of the blood vessels is really bad, so I have opted to take enough prednisone to totally or nearly eliminate the pain, let things stabilize, then slowly reduce the prednisone dose.

    Others opt to keep the prednisone dose lower and put up with some pain.  

    To reduce morning stiffness, some members of the forum take the prednisone at bedtime or in the middle of the night, or split the dose between morning and evening.  

    As others have mentioned, I don't think PMR stiffness should be relieved by painkillers, so you may have something else going on.

    You should be able to get better relief, so a visit to your doctor may be in order.  Good luck!

  • Sheilamac_Fife
    Sheilamac_Fife Marla0415

    Posted

    I am another fortunate person with no stiffness or pain since Prednisolone kicked in nearly 2 years ago. Provided I take the right dose for me, and ignore the GP's exhortations to reduce faster!... I have managed to avoid full blown flares by going back up to the comfortable dose or simply stopping reducing for another week or two. The thing is we are all different. 

    As as others have said, maybe you have another condition alongside PMR but Eileen has said recently that some people need to take as much as 25mg at the beginning to get the inflammation properly under control before reducing.

    I still suffer quite badly from the fatigue, brain fog and blurry eyes, all of which are not helped by Pred and some are caused by it.

  • maid_mariane
    maid_mariane Marla0415

    Posted

    Hi Marla

    I was originally on 15 then up to 20mg but pain crept back around 3pm. I then started splitting the dose 15mg am and 5mg pm. With rumis help we now have me taking my pm dose at 3pm and it works great. It also took me months at 20 mg for my body to stabalize so hang in. I'm very sensitive to steroid reduction so in 6mos only at 17mg. We are all different but many of us split our dose.

    Hope this helps.

  • beatrice74480
    beatrice74480 Marla0415

    Posted

    \i think everyone is different in tolerating the stiffness and pain, I do agree with you in Oh to wake up feelinggood one day,I am back on 2,5mgs after being off Pred for 3 months it was slowly creeping back from being in remission, it is generally thought that u find your acceptable levels and find which dose is suitable for you, 
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.