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PMR and pulmonary embolism. Is there a connection?

Posted , 11 users are following.

megan42504
megan42504

diagnosed with PMR EARLY 2018. unbelieveable how it turned my life upside down. im 51, which may have made my diagnosis difficult. now my RA thinks i may have psoriatic arthritis as my C REACTIVE PROTEIN levels are higher than ever. was put on higher (20mg) dose of prednisone, now, of course, i wont find out until 9 weeks out. that is my usual appointment schedule. okay, thats a wee background

NOW ITS OCTOBER 23rd. my husband is home from a business trip.... immediately makes an appointment for me with my primary. Ive been in bed for days dealing with what i assumed was flu/cold.

5 hours later im in ICU with an enormous pulmanory embolism. the kind most dont recover from.so scary, as shortness of breath was my only symptom.

0 likes, 12 replies

12 Replies

  • lynda62707
    lynda62707 megan42504

    Posted

    Megan...I'm sooo sorry to hear of your woes. I too was dx in May of 2018....and yes, you're so RIGHT! My life has become a NIGHTMARE!

    I don't have answers for you, but you've come to the right place. there's alot of good information and kind support here!

    btw....I too have alot of shortness of breath, along w/a myriad of other really "crummy" things ( both pmr related and prednisone related.😖

    please keep us posted....Lynda

    • megan42504
      megan42504 lynda62707

      Posted

      thanks.!

      ive learned to never ask "what next?" and as scary/life threatning as my PE, it doesnt touch what PMR did to my life. UGH.... I still have to dral witb prednisone.

      is it just me? why isnt there spellcheck , or something similar here?

  • EileenH
    EileenH megan42504

    Posted

    https://www.ncbi.nlm.nih.gov/pubmed/25265937

    If your CRP levels are so high and you have such a high CRP why is your rheumatologist considering this may be PsA rather than the PMR actually being, or having progressed to, large vessel vasculitis /GCA? As the link above says, there is an increased risk of thromboembolism in general and PE in the first year after diagnosis of GCA. Extreme breathlessness is frequently the only symptom of PE. In fact there is an increased risk of various cardiovascular events including heart attack and stroke in the first year post diagnosis of GCA. It is still a small risk, but it is increased.

    https://academic.oup.com/rheumatology/article/56/4/506/2631560

    is an interesting article about how PMR/LVV/GCA overlap: PMR isn't always "just" PMR.

    I would should show your ICU doctors the links - because my own experience with my husband this summer shows they are rather more on the ball than other specialists.

    Get well soon.

    • megan42504
      megan42504 EileenH

      Posted

      exactly!!! WHY???? the entire ICU STAFF was on top of it. my ra, who has made it very clear that he will only treat my PMR, or whatever he thinks i have, has no desire to share notes with my other specialists. and because of this he didnt focus that i had insane psoriasis a year ago. i really need to spend more time connecting the dots, .. what is going on with me! as always, thanks for the links. i have a lot of time on my hands these days.

    • EileenH
      EileenH megan42504

      Posted

      Why? Because they all too often are clearing up the mess made by others... How judgmental of me!

      BTW, there IS spellcheck for US English - on my computer it shows up as the world being blocked in pink until it agrees I have spelt it correctly (except I don't because I steadfastly use UK English), If you are on a phone - I don't know!!

  • susan43406
    susan43406 megan42504

    Posted

    Megan this is all so scary for you. Thank goodness your husband recognised you were so poorly. I think Eileen is spot on. Do discuss with ICU Drs regarding the cause of your thrombus/embolism being part of the Vasculitis picture. You are in the best place for now, am sure they will take good care of you. Hope you feel much better soon.

  • ptolemy
    ptolemy megan42504

    Posted

    My gosh, a pulmanory embolism is definitely not what you want to have. At least your primary recognised there was something drastic wrong.

    • megan42504
      megan42504 ptolemy

      Posted

      very scary day. i honestly thought i had the flu, and was just gonna sleep through it. ugh... cant imagine.

      thanks!

  • margaret22251
    margaret22251 megan42504

    Posted

    my best wishes to you Megan, you have agreat husband who acted quickly, and armed with the information given by Eileen the doctors should do their job

    please keep us all informed

  • megan42504
    megan42504

    Posted

    C REACTIVE PROTEIN 26.0. back on 20 prednisone..

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