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Should I increase my pred again and by how much ?

Posted , 7 users are following.

jan21306
jan21306

i was diagnosed with PMR in Sept 2014.  Was down to  71/2 mg in April and had to go up to 91/2 mg.  (i had a four hour drive there and back over three days, it was too much). I was back down to 8 and am going through stressful time and having a lot of stiffness in legs and am very fatigued.   (Have been fatigued all through really).  Should I go back up again and by how much?  I am supposed to be going away for the weekend on Friday, and also in two weeks time for a week.  The stressful time is ongoing as well.  I am reluctant to up my dose as I have so many side effects, but I dont think I  can cope like this.  I need some advice from you wonderful experienced fellow sufferers please.  

2 likes, 16 replies

16 Replies

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  • gillian_25383
    gillian_25383 jan21306

    Posted

    Usual to go back up 1mg and stay at that dose for a month before trying again.This should cover your holiday then see what you are like once back in your normal routine
  • Oregonjohn-UK
    Oregonjohn-UK jan21306

    Posted

    Gillian's advice is good - it's what I would do.  I stayed at one dose for some time, due to going in for an op last year, and waiting a few week for things to return to 'normal' before starting reducing  again.  I have taken a bigger dose for a couple of days to see me thru' a difficult time and then reduced back in small steps to the original dose.  I would rather do this than risk a major flare in the pursuit to reach zero.  I have only been on Mr Fred for 14 months.
    • jan21306
      jan21306 Oregonjohn-UK

      Posted

      I think i shall do the same in future.  I know its not good to yo yo the doses though.  So probably not good to do it too often.   I like your name for pred !
  • lodgerUK_NE
    lodgerUK_NE jan21306

    Posted

    Go back to 10mg and stay there till you have been away for the weekedn and then your two weeks away.

    Then choose a time to reduce when you have sent for the two reduction plans available.  To get these free of charge you need to follow this link http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 to the pinned section and then go to the OMR&GCAuk North East Support website and email them, subject heading REDUCTION PLANS.

    They have both worked for patients and one of them is currently being undertaken by a research group.   Both were devised by patients for patients.

     

    • jan21306
      jan21306 lodgerUK_NE

      Posted

      thanks  Lodger.   I have been doing the. Dead slow. ....... One.   Something is 
    • jean39702
      jean39702 lodgerUK_NE

      Posted

      Hi Lodger.  Can you tell me which of the two is currently uner research. The DSNS or the other one?
    • jan21306
      jan21306 lodgerUK_NE

      Posted

      I have given My ipad a rest and it seems to be working again!  I have been doing the Dead Slow and Nearly Stop one since April, and thought it was going well.   Will have to up my dose and then start again.  Thank you for your help Lodger.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey jan21306

    Posted

    Jan, PMR loves stress so, basically, the more stress you are under, unfortunately the more steroids you will need.  Hopefully, the forthcoming time away will mean you are away from whatever stress you are experiencing - meanwhile, I would say the same as Lodger: increase to 10mgs and remain there until your travelling is over, your stiffness has resolved and your fatigue has improved, but remember it is only a very lucky person who doesn't experience a certain amount of fatigue along the way.  Enjoy your time away, and the more you can remove the stress issue, the better. 
    • jan21306
      jan21306 MrsO-UK_Surrey

      Posted

      Thank you all for your swift replies, they have confirmed that I should up the pred again.    Unfortunately the stress is not going to go away any time soon, I just need a better way of dealing with it.  Very depressing!     It is always good to come on here and chat, I find having PMR a very lonely time.   There arent many people who understand how debilitating it can be and how it can restrict what you can do.  
    • gillian_25383
      gillian_25383 jan21306

      Posted

      When my shoulders are not too bad I like to get engrossed in a book that is not too taxing on the brain.If my legs are not too bad I take a pre-emotive painkillers and go outside in fresh air.On a really bad day I watch a DVD as I can just about manage the remote control.If you have a good friend who will listen-a good moan works wonders
    • MrsO-UK_Surrey
      MrsO-UK_Surrey jan21306

      Posted

      Jan, wherebouts are you?  If in the UK, there may be a support group somewhere not too far away where you can meet up with others who understand what you are going through - a trouble shared is a trouble halved....
    • jan21306
      jan21306 gillian_25383

      Posted

      Thanks Gillian, Thats about the same as me!  I have one very good friend who has bothered to read up all about it and she is a good listener as well. You are so right, a good moan is very helpful.  Then when she wants to have a moan I can reciprocate.
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