Worried: I am newly diagnosed and also suffered a... - PMRGCAuk

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Worried

Bev61 profile image
8 Replies

I am newly diagnosed and also suffered a small pleural effusion . My worry is my inflammatory markers are still high crf is 200 and esr 70 . On 15mg of prednisone but wake up at 4.30am every night in pain with shoulders. Still hurting to take a deep breath . Back to GP today to see what he suggests . Anybody else have high markers of inflammation?

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Bev61 profile image
Bev61
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8 Replies
SnazzyD profile image
SnazzyD

Hello there, what a rubbish time you’ve had. To help people giving advice, how long have you been on Pred for? Not everyone gets pain relief instantly. Sorry if I have missed that detail. Did they establish the cause of the effusion? The trouble is with inflammatory markers they don’t tell you what’s what, just that something’s up which it clearly is for two reasons at least.

jinasc profile image
jinasc

It sounds to me that your 15mg is not enough. The recommended starting does is 15mg-20mg. Contact your medics and tell them exactly what you have told us or this is where I am naughty, if you have enough pred - up it to 20mg and see if you get releif.

jinasc profile image
jinasc

Hi, sounds to me like your starting dose is too low. The recommended start dose is 15mg -20mg.

Contact your medics, tell them what is happening and ask for the dose to be upped to 20mg for at least 10 days and see what happens.

PMRpro profile image
PMRproAmbassador

Have you had tests to see why you have the pleural effusion? Sometimes PMR can be a symptom of something else and with the pleural effusion that is a possibility here.

If the markers are very high and not falling on 15mg, they should also try a higher dose of pred. If the markers then don't fall they should do other investigation.

Bev61 profile image
Bev61 in reply to PMRpro

Hi , no tests as yet just very high dose of amoxicillin for 4+days. Waiting for a further chest x ray to establish if effusion gone . GP sending me on 2 week wait to respiratory consultant .

SheffieldJane profile image
SheffieldJane

Poor you! I hope it has gone with the antibiotics. If it turns out that you definitely have PMR (I agree about upping to 20mgs). It is worth knowing that our bodies shed an inflammatory substance at around 4 - 4.30 am, hence the bad symptoms waking you up then. If you take your Pred at 2am with something to line your stomach, you may find that you don’t wake in pain at 4.30am. This does work (if you can get back to sleep). Good luck. X

Bev61 profile image
Bev61 in reply to SheffieldJane

Hi Jane thank you for the info I will definitely try your suggestion. Took an extra 5mg today and feel a lot better . That takes me to 20mg

SheffieldJane profile image
SheffieldJane

Let us know how you are doing. X

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