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How much pain is normal?

Posted , 7 users are following.

shirley40391
shirley40391

I have recently had a flare up and have had to go from 7mg to 10mg pred.  I completed 4 weeks at 10mg and then came down to 9mg on Tuesday.  I am in a lot of pain in the mornings and very stiff.  By the time I have taken all my tablets and some pain relief I am 'good to go' after about 3 hours after getting up then I have the usual wonderful time of more or less freedom of movement and little pain till it gets to about 9-10pm then more pain killers and bed.  I am sleeping pretty well but if I have to get up to go to the loo I struggle to get out of bed and get there....do you think I am not getting enough from my steroid dose.  I am desparate to get off the things but life is really bad without them.   I also find I need a sleep in the afternoon most days.   Sorry for the rant but just don't know what is 'normal' with PMR if there is such a thing.  Many thanks to everyone who contributes on here you have been a real life line.....

2 likes, 11 replies

11 Replies

  • tina-uk_cwall
    tina-uk_cwall shirley40391

    Posted

    Hello Shirley, I need to ask if all this pain and stiffness is a recent occurrence. How were you at 7mgs? If you were pain free and without stiffness then you know this is an achievable situation. How were you at 10mgs? If you were pain free and all this pain and stiffness is new then maybe you needed to stay at 10mgs a little longer. Or if you still had this pain at 10mgs maybe you reduced too quickly.

    can you tell me how long it is since you were diagnosed with PMR and on preds?

    regards, tina

  • judy93591
    judy93591 shirley40391

    Posted

    Hello, just read your post, and I am in the exact place that you are!  I could have sent your message.  to answer Tina for me, yes, I was great @ 10mg Am and Pm.  Then Dr started cutting @ 3 weeks.  Gettting to about 5 pm, all hell broke loose.  moved back to 6, still no relief, now, for 4 days been back to 10 AM and PM, but still experienceing the hip pain unless medication midday and before bed (Tramadol and Ibuprofen)  I was only diognosed 5/11/15, and like Shirley, this is totally a new, unknown, unwanted disease.  Will be seeing a Rheumatologist end of August, soonest I was able to get an appt.  My GP thought perhaps she would have more info to assist, but this pain is eating me alive!
    • tina-uk_cwall
      tina-uk_cwall judy93591

      Posted

      Judy,  PMR is scary for all of us and many of us find it hard to get our heads round, take me, I'm as hard as nails, I don't take any *^+? From anyone, yet this condition left me a jibbering wreak.

      i presume you were diagnosed in November 2014 which means you are only 9 month in. My rheumatologist as good as had me reducing in line with the Bristol PMR plan. 15mgs 6 weeks, 12.5mgs 6 weeks, then 10mgs for 6 months. You sound as if you have split your dose, I can't comment on that as I have never done that but my dose is taken altogether at about 8am.

      but am I right in reading that in 9 months you had reduced to 5 mgs? If that is right, in my opinion you have reduced far too quickly and the inflammation is not under control.

      i had a flare just prior to Christmas attempting to reduce from 9mgs to 8mgs. When I upped my dose to 10mgs it took maybe 2 weeks for all the flare to really be brought back under control and I stayed on that dose fir 6 weeks. So you may well still see an improvement yet.

      one word of caution which I'm surprised your GP hasn't mentioned. Preds and ibuprofen are not friends and therefore patients taking preds are warned against taking ibuprofen. Not only can they cause damage to your stomach but can also damage your liver.

      i suggest now you are on 10mgs stay on it for a good 6 weeks then reduce by only .5 using the dead slow and almost stop method. This method sort of introduces the lower doses of preds more gently and if you ever do begin experiencing a flare you get a far more accurate account of what inflamation level you are at. I hope this is of some help. Regards, tina

    • judy93591
      judy93591 tina-uk_cwall

      Posted

      Tina thanks. I was only diagnosed on 5-11-15. Primary care DR started me on 10 mg, 2 x a day. I was pain free. WONDERFUL. 3 weeks later he had me start cutting 1 mg at night, for a week at a time. OK for about 4 weeks, when first flare, left side. Couldn't hardly walk. Increased up to 6, gave injection in butt, improvement , 3 weeks, pain into right hip.  Now back up to 10 mg, 2 x day.  Been on that 3 days but not a lot of improvement. He did tell me about the ibuprofen, ugh, but it is only thing midday along with tramadol, that lets me walk reasonably safe!  I had Always been so darned active...walking 4-5 miles daily,Milne dance 2 days, now, NOTHING!  I have an appt with a Rheumatoligist end of August. PCP says she may have other options for me. I have gotten a lot out of knowing others are going thru this also. I get so darned depressed, life as I knew it seems buried somewhere. All my years of good health must have saved up to hit all at once!  Thank you again for replying, 
    • ptolemy
      ptolemy judy93591

      Posted

      Judy are you saying you are taking Ibuprufen and pred? It is just that they are considered contra indicatory and should not really be taken together. I must admit Tramadol did not have any affect on the PMR in my case at all. You do seem to be yo-yoing a bit which also is not good news. You need to reduce slowly but surely, going up and down can make things more difficult in the future. I know how you feel about having good health in the past, it is really life changing when you lose it.
    • lodgerUK_NE
      lodgerUK_NE judy93591

      Posted

      Follow this link http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 to the pinned thread on this site.

      Then follow the other links and read up.  Yo-yoing your dose can cause problems and you do not want to go down that road.  Too fast a reduction as well.  If you go to North East site, follow the link, email them and ask for copies of the reduction plans (free of charge) also take a look at Support (click on it).

      NSAIDS, as ptolemy has said are a no no whilst on pred and Tramadol really won't help. 

       

    • judy93591
      judy93591 lodgerUK_NE

      Posted

      Thank you NO MORE IBUPROFEN FOR ME!  Boy, do I know bad from yo yoing.  I am checking out the link and info you provided! 😊
    • ptolemy
      ptolemy judy93591

      Posted

      As lodger says reduce slowly. I have had a rheumy and GP who seem much more interested in my pred dose being reduced than the pain I am in. They have suggested reduce reduce reduce thus causing flares, which in fact is detrimental and means reduction is actually slower in the long run and much more painful.
  • ptolemy
    ptolemy shirley40391

    Posted

    Shirley you do have to give in to your body, I have discovered that PMR is in control. PMR can cause horrible fatigue so if you need a rest in the afternoon have one, don't feel guilty. Can you take the pred slightly earlier so you are not so stiff? Some people split the dose if one lot of tablets does not last the full twenty four hours for them. The pred should sort out the pain for you and if it does not the dose is incorrect. 
  • tina-uk_cwall
    tina-uk_cwall shirley40391

    Posted

    Shirley, are you the same Shirley whose GP has referred you to a rheumatologist after having PMR for 2 years? Regards, tina
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