SED Rates

Posted , 8 users are following.

How soon after starting the pred. did you see your SED rates return to normal? I have been on prednisone for just over 5 weeks, 10MG at first and then upped to 20MG a week and a half ago. My new SED rates (From Friday) are 78- that is down from 108, but just doesn't seem low enough? 

1 like, 14 replies

14 Replies

  • Posted

    Hello Heyyady. it would seem that the inflamtion is coming down, how are you doing with the aches+ pain,if that has improved you are on the right road.I have always gone by what my body is telling me& info from the forums.THE main aim for me is not to rush to reduce but to very slowy reduce.dont be afraid to post for info some one will be there with good info.Take Care Dave.
  • Posted

    I am on 20 mg and will stay for a week, then lower by 1 mg (19 mg daily) for a month....annd then 18 for a month.  VERY slow reduction.  I don't want another painful flare up when I reduced by 5 mg after a week. 
  • Posted

    It can take some time - it all lags a bit behind the inflammation being combatted. No, it isn't low enough but it will continue to fall. 10mg was nowhere enough and won't have achieved much and you will probably need to be at 20mg for up to 6 weeks to see a real improvement in the figures because the existing inflammation must be cleared out first.
    • Posted

      Eileen, thank you for your guidance in your previous reply to my question of prednisone reduction.  I just really want to go VERY slow this time to reduce another painful flare up.  I noticed that stress and not the right selection of anti-inflammatory foods  at the time caused some of the shoulder and lower back pain connected to the SI- joint and piriformis muscle inflammations.  Physcical therapy has been helping, and trying to reduce climbing steps in my townhouse as much as possible. I am planning to sell this house and move into an apartment this summer.

      I finally feel better after 3 weeks,  and I don't want to rush the reduction of prednisone.  The shoulders are better ......most of all I have a WILL TO LIVE and not think about my pain.  :-) 

      Hope, the Fasching festivities are not too annoying for you.  They will end soon.

      Thank you again for your kind help.  Erika

    • Posted

      When my PMR went downhill and hit like the proverbial 10 ton truck it was just after we had moved from a house with toilets both up and downstairs and I was having to climb stairs several times a day. I came here to our flat and things improved dramtically - and I'm positive it was "stairs" that was the reason. This is all on one level and there is a lift to the second floor (level 3 to you I think). Not doing steps made a lot of difference and the same thing happened when the hip bursitis flared - every time I had to do more than a couple of steps the bursitis was made worse and more painful.
    • Posted

      Thank you Eileen, it is good to hear your opinion, and it confirms that I need to make this important change in my life with PMR. 

      I am so glad for this forum and the help and guidance I am able to receive.

      Erika

  • Posted

    From what I understand, normal sed rates are  different and have to do with age

    I am 71 Started off one year ago on 20 mg.down to 12 mg a day now for a month.

    My ranges are now back in low 30s  which is supposedly a good sed rate for this disease with my age, however, my doc does not want me to go back high, so we are doing it one mg a month at a time.. I still during each month have at least one or two days when I have zero energy..and I am always surprised!

    • Posted

      It has been thought for years that sed rate rises with age. More recently it is being thought that, yes, it does go up with age for many people but it isn't "normal" it is an indication there is inflammation present in the body with few or no symptoms. These days they like to see it under 25 whatever age you are.

      Mine has been up to the dizzy heights of 7 on one occasion, normally it is 4. I'm early 60s but another lady in her mid 60s and another who is 70 both have readings of 2 to 4. 

    • Posted

      Hi Eileen,

      do they only do ESR's in UK and Italy? I have monthly CRP's here (USA) and no ESRs. 

      Barbara

    • Posted

      We have CRP taken in UK too. Last month my CRP went down and my ESR went up to 60 it has been as low as 30, but I did have a cold. In my case my CRP seems to show how I feel more than my ESR. 
    • Posted

      It depends on the doctor probably. It doesn't make any difference to me - both remain stubbornly normal however bad I feel!

      There is another measurement called plasma viscosity which some places use instead of ESR. All of them are very non-specific - although some doctors will tell you that CRP is more specific. No, it isn't that much better - the CRP does not alter with age, is slightly less sensitive to a cold and it is less important how the blood sample is stored and how soon the test is done, ESR must be done in less than 4 hours. 

      It is said that studies showed that doing both ESR and CRP are more specific in diagnosing PMR but I would say the figures aren't that different. For the purposes of monitoring how effective the treatment is being it depends on the patient - and anyway it is the symptoms that should be king not blood tests. The bloods can be fine but the symptoms worse - because they lag behind. The same applies in rheumatoid arthrtitis - and it is a constant bugbear of patients who know their pain is getting worse but their bloods are still fine. 

  • Posted

    My pain level has been steadily rising again, even on 20mg- Not nearly as much as before treatment/diagnosis, but enough to make everything uncomfortable and make me stand at the bottom of my stairs and curse all 16 of them before going up. 
    • Posted

      I also get A LOT of muscle pain in my forarms and lower legs sad
    • Posted

      Have you been resting since diagnosis and pred? The pred just helps you manage the pain and stiffness by combatting the inflammation. YOU have to do your part too - your muscles are still intolerant of exercise and you MUST adjust your activity to help manage it too. In time you will be able to gradually build up the amount you do but it won't come overnight and you will have to "get into training" very slowly. It took me months at 15mg before the forearm pain faded - it's a mixture of muscle claudication and tenosynovitis and both need a long recovery. You can't rush it either. Those first few days when pred kicks in seem magical - but it is relative to the amount of pain you had beforehand. As soon as you then try to go back to normal activity you make it worse and the dose of pred that was so wonderful is barely enough. The side effects at higher doses are worse (at least, that is what is thought) so taking a bit longer for the lower dose to have its effect is worth it.

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