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

Another variation?

Posted , 10 users are following.

TheRaven
TheRaven

Without reciting every chapter and verse,  I was diagnosed with PMR one year ago and have had "normal" success and setbacks.  I have struggled to be pain free below 15 mg of Pred, even when using DSNS method (got to 14 last month but had issues at 13 and have moved back up the ladder).  Have used split dose successfully (doses at 7 am, 7 pm) for last 8 months to wipe out morning pain.

In the recent weeks since having minor to moderate pain at 13 mg, I've noticed that when I get up in the morning I'm feeling very well with virtually no pain except minor twinges and swelling in hands.  However, within 30 to 60 minutes of getting up I'm having pain in the shoulders, biceps, thighs, knees and hands that rates a 5 or 6 on a 0-10 scale.  This holds on for a couple hours and then fades away over the next couple hours - usually.  I assume that's because the morning Pred dose is kicking in.  However, some days like today it hangs on until 2 pm.  I'm just surprised at the delayed pain startup in the morning and that the split dose suddenly doesn't seem to be doing the trick. 

Just as a test I kicked the split dose back up to 10/5 (had been DSNS at 10/3,10/4) the last 2 days with no resulting change.   In the past couple weeks I've purposely reduced to virtually no physical labor at work or home, so I wouldn't think that would be an issue.  However, stress levels have been off the chart dealing with life threatening issues regarding 2 of my 3 adult children.  That's the only thing I can really point at that's changed.

Anyone else started the morning fine for a while and then have gone backwards for 4-6 hours?  

1 like, 5 replies

5 Replies

  • Rudivl
    Rudivl TheRaven

    Posted

    Dear Raven, 

    I can relate to your story and, like you, I am currently struggling to be pain free under 16 mg.  I have pain as you describe and I'm 3 years in. I  split my dose and take 5mg before bed so my mornings are OK but often feel pain later.  Some days I don't notice as much pain and other days, particularly if dealing with stress, I seem to flare.  I have had to become more accepting and take a day at a time.  It is frustrating to now be so sensitive to stressful situations when before my body could regulate its response more effectively.  Sometimes it drives me mad trying to figure it all out - I seem to yoyo between, 'Let's go for a reduction and I'm ready to start the DSNS,' to 'I need to throw 20mg at it for a few days as I can't cope!!'  It sounds like you are dealing with awful stress regarding your children and perhaps now is not the time to be reducing? Be kind to yourself.  RD

    • TheRaven
      TheRaven Rudivl

      Posted

      Rudivl,

      Thanks for the response.  Yes, it sounds like our PMR adventures have much in common.  I'm generally able to go a day at a time and roll with the punches but this change in when the pain would flare up confused me,  I was curious if anyone else had run into this.  Sounds like we're "reading from the same book".   If things don't settle down a bit tomorrow I'm inclined to boost the evening dose up to 7.5 mg and see what happens in the morning.  Tonight I'm going to postpone the evening 5 mg dose 2-3 hours and see if that makes a difference first.  I'm inclined to agree that stress is playing a big factor in this.  You are probably correct - there's a better time to try reducing again.  I appreciated the thoughts and comments!

      A month or 2 ago I somehow managed to forget to take my morning and evening doses.  Yes, I must have lost my brain that day.  It was a great reminder of how much worse things would be without Prednisone!!!

  • Michdonn
    Michdonn TheRaven

    Posted

    Raven, my mornings are when I have my problems. Once I am up, take my Pred move a bit I am on my way for the day. Smiling 🙂

  • nick67069
    nick67069 TheRaven

    Posted

    I must say that increased symptoms are not typical for PMR, unless it is late in the day and your initial morning dose wears off.  Typically morning stiffness is common.  I used to split dose, but now that I am at 4mg, I take it all very late at night, and I noticed increased stiffness in the evening ( I guess I am one of those people that discharge pred  out of the system in less then 24hours).

    Maybe someone with similar symptom pattern to your will come by to help you.

  • EileenH
    EileenH TheRaven

    Posted

    And this still happens even if you take an evening dose of pred? That honestly sounds more like a mechanical problem with spine/back muscles rather than PMR. 
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.