Diagnosed with Pmr at 39

Hi everybody. I am now 45 and have been diagnosed 6 years ago. I' ve been treated with massive doses of pred for about one year and then it has been lowered to a maintenance dose of 6 mg/day. I've also been taking 150 mg / day azatioprine for the past two years( methrotexate didn't show any result) .I Have been in and out outrageous pain as most of us have. But there' s something that's been bothering me a lot. My sed rate has never been under 60 and is currently 89. My rheumy tells me the treatment is correct and I trust him 100%. But I wonder why the inflamation is so active.

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  • I'd imagine there might be something else going on to do that - has it never been investigated? Is the CRP also raised?

    "A very high ESR usually has an obvious cause, such as an infection. The doctor will use other follow-up tests, such as cultures, depending on the patient’s symptoms.

    Moderately elevated ESR occurs with inflammation, but also with anaemia, infection, pregnancy, and old age.

    A rising ESR can mean an increase in inflammation or a poor response to a therapy; a decreasing ESR can mean a good response.

    A common cause of high ESR is anaemia, especially if it is associated with changes in the shape of the red cells; however, some changes in red cell shape (such as sickle cells in sickle cell anaemia) lower ESR. Kidney failure will also increase ESR. People with multiple myeloma or Waldenstrom’s macroglobulinaemia (tumours that make large amounts of immunoglobulins) typically have very high ESR even if they don't have inflammation."

    Were you investigated thoroughly at the time? PMR is a very unusual diagnosis in and under-40 year old - it is bad enough trying to get them to admit someone in their late 40s has it! You should also not have need "massive" doses of pred if what you have is PMR - it typically responds to 15-20mg/day before reducing to the "maintenance" dose.

    But you're right, it is very strange.

  • It is, indeed. Imagine how lost I feel everytime I get my blood tests results. My Crp is currently 12 but it was originally 64. My urine tests always show presence of protein and blood. I' m having my kidneys scanned on Friday. Maybe this will put a light into something else which at this stage would be much more comforting.

  • "My urine tests always show presence of protein and blood" - if there is blood in urine there will automatically also be protein because of the blood.

    How was the scan?

  • That is interesting my sed rate is quite high too currently 52 although it was originally 127. It did drop to 35 at the beginning of the year but then shot up again to 65 after a cold and has dropped a bit since. My GP keeps panicking about it, but my CRP is currently 6, originally 123.

  • Doctors in panick is the last thing we want to witness. 😉

  • Pretty frightening eh!

  • Hello Andrea and welcome! If it was me, I would be seeking a second opinion - you need further investigation.....the kidney scan on Friday is a good start, so lots of good luck wishes there.

  • Thank you, Celtic! I surely will.

  • certailny a second opinion,something does not add up,thats a lot of prednisilone

  • Yes, a much lower dosage of Pred. Should of stopped the pain 15-20. You are very young for PMR. I would say it's something else!!! best luck and prayers on Friday! 💕💖💞💘

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