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Does inflammation always show up on a blood test ?

Posted , 9 users are following.

Royall
Royall

if anyone can remember I was on here a while ago as I thought that I had a small flair when I reduced my Pred down from 10 mg to 9 mg I had also started exercising on a bike. I have stopped exercising on my bike and I still have pain at the top of my legs and neck although the discomfort wears off during the day sometimes it comes back late in the evening, When I was first diagnosed with polymyalgia I was in pain all day and could hardly walk, I spoke to my doctor to ask if I could go back up to the 10 mg and he said that he would rather I didn’t as he is worried about my bones he also said that my next blood test would determine what was going on , well I have my blood test on Monday and I am worried that it won’t show any inflamation and I will probably have to drop from 9mg to 8mg 😢

0 likes, 18 replies

18 Replies

  • Silver49
    Silver49 Royall

    Posted

    I don't know how long you have been on Pred but it's possible that a blood test may not show inflammation. Some people who have PMR do not necessarily have the blood results to show but will have the symptoms which lead to the diagnosis. It may be better to drop .5 mg instead of 1mg at this stage or you may have reached the optimum dose to deal with your PMR at present. Are you using the DSNS method? Most people find it works and as we are all so different some have to use it earlier than others. I'm sure someone more knowledgeable than I am will be along soon to advise.

    • Royall
      Royall Silver49

      Posted

      Hello Silver. I started on 10mg on the 04.10.2017 then went down to 12.5mg on the 10.12.2017, then 10mg on the 12.01.18, 9mg on the10.03.18 that is when the discomfort started , initially my inflamation level was very high but I was in a lot of pain and very stiff.

       

    • Silver49
      Silver49 Royall

      Posted

      I wrote a long reply and then it disappeared. I'm sorry but I'll make it short. This is where I had my only flare and I went back to 12.5 for a few days, possibly a week then dropped to 11mgs. I am now on 2.5mgs and following the DSNS method. I had to stop Calcium because of heart rhythm problems but bought capsules with Vit D and ensure that I have plenty calcium in my diet. I have never had a Dexascan but I would suggest it would be prudent and then you can discuss with GP if it shows a bone problem. 

    • Royall
      Royall Silver49

      Posted

      Thank you silver , and I wish you good luck with your Pred 😀 journey 

    • Silver49
      Silver49 Royall

      Posted

      Thank you, Jenny. I notice you have had a dexascan and have osteoporosis but I see that Eileen has sent a reply with her always helpful knowledge. She is amazing and we are so fortunate to have her and others who are also knowledgeable. I hope you have success when you raise the dosage. 
    • Royall
      Royall Silver49

      Posted

      We are indeed very lucky. And thank you 😊

  • ptolemy
    ptolemy Royall

    Posted

    Around 20% of people do not have any effect on their blood tests, which of course can be very frustrating. I am amazed that your doctor said do not go back to 10mg it is a pretty low dose and is not helping the PMR which could run out of control at a too low a dose for you. Out of interest has your doctor prescribed vit D and calcium for your bones? He should do if you are on pred.
    • Royall
      Royall ptolemy

      Posted

      hello Ptolemy. Yes I am taking Adcal-D3caplets for my bones , I also started tacking Risedronate sodium tablets the same day as I dropped my Pred  from 10mg to 9mg. When I first had polymyalgia my inflamation was very high , this is manageable i can walk and get out of bed in the morning dress my self but the back of my legs are stiff when I rise and my neck is really painful . 
    • ptolemy
      ptolemy Royall

      Posted

      Hi Jenny, have you had a Dexascan showing problems with bone density? If not I think I would get one done before taking a bisphosphonate such as Risedronate. 
    • Royall
      Royall ptolemy

      Posted

      Hello Ptolemy. Yes I had a Dexascan  in late November which showed that I had  osteoporosis so in December I started to take Alandronate which made me pull muscles in my legs/ hamstrings really easily I was in a lot of pain so my doctor told me to stop taking them, I had a little break and then I started to take Risedronate 
    • ptolemy
      ptolemy Royall

      Posted

      Fair enough. It is just that a lot of doctors, including my GP, are keen to give bisphosphonates because of the steroids even though Dexascans show no problems.
  • EileenH
    EileenH Royall

    Posted

    About 1 in 5 patients never have raised markers and some may have raised markers at first but they don't rise again during a flare if they are already on pred. 

    Your doctor is a bit naive I think- if you need 10mg you need 10mg and your bones have to be a secondary consideration. This recent work, however, 

    https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

    shows there is far less risk for PMR-level doses of pred - and if you were to develop osteoporosis there are drugs to increase bone density. I assume you have had a dexascan done?

    I think you probably need to go back a bit and then try a slower drop once you are out of discomfort. This group keep their patients at 10mg for a year and find that reduces the rate of flares:

    http://www.rcpe.ac.uk/sites/default/files/quick.pdf

    It is all very well your doctor not wanting to allow you to take the dose you need - but if you are on too low a dose all that will happen is that the inflammation will build up until you are back where you started - and needing to have a higher dose to get things under control. Which is exactly the opposite of what he wants to happen.

    • Royall
      Royall EileenH

      Posted

      Thank you EileenH that is what is worrying me if there is no sign of inflammation in my blood than my doctor will want me to go from 9mg to 8mg . To be honest I feel really let down by my doctor ( in the past I have always praised him ) I actually asked him if I could go back up to 10 mg for a while, and he said he would rather I didn’t until I had my next blood test , ( because of my bones ) the thing is the pain is getting worse my neck is really painful and the back of my legs. I had my blood test this morning and I have tried to get an appointment with my doctor for this week as I am due to see him on the 11th May and I don’t want to wait that long. Do you think I would have to go higher then 10mg ? My starting dose was 15mg and I did not get full relief from the pain for about 1week. Many thanks. Jenny 
    • ptolemy
      ptolemy Royall

      Posted

      You should be able to get the blood test results from the receptionist, so at least then you would know if they were raised. They should be able to print them out for you too. My GP usually writes notes against the results and you would see if any comments have been made. 
    • Royall
      Royall ptolemy

      Posted

      Thank you I never realised that you could do this, when I was first diagnosed my doctor gave me a printout so that I could see how high my inflamation was,last time that I had a blood test my doctor sent me a message saying bloods are normal see you in a weeks time ! I’ll give it a couple of days and then ask the receptionist for a print out of my blood test.
    • ptolemy
      ptolemy Royall

      Posted

      I find it really useful and being a nerd put them on a spreadsheet!
    • EileenH
      EileenH Royall

      Posted

      They may be "in normal range" - but that doesn't mean they are normal for you! Mine bumbled along at an ESR of 18 or so when I was so crippled I could barely walk. MY normal is 4. The "normal range" is the range of reading you find in a population of thousands - what is important is where you are on that range. But many GPs don't understand the statistics...

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