confused

[tinwoman]

Inflammatory markers down to normal on 12 but I still have PMR symptoms. using slow method to reduce from 12 to 11 and symptoms getting worse. GP saying if inflammatory markers normal then no longer have PMR. Really confused please help. don't think this is correct as I am sure there was a post some time ago about the relationship between inflammatory markers and PMR.

[Jude62]

I am with you on this.... exactly the same . I guess we should stick at 12 mg a bit longer and stuff any inflammatory markers!

[PMRpro Ambassador]

a) your inflammatory markers SHOULD be normal when you are on pred - it shows the pred is an adequate dose and is working. It is a way of monitoring the success of the treatment.

b) just because your markers are normal does NOT mean the PMR has gone. See a)

c) the only way you can tell the PMR has gone is by reducing the dose to zero without the symptoms returning.

d) in some people the markers don't go back up even in a fare while they are on pred - no-one knows why, it is just so.

e) what was your symptom level at your starting dose? You are looking for the lowest dose that gives you that same result. You may not be totally pain-free but it shouldn't be worse

f) if you have symptoms - don't reduce until you are more comfortable. You may need a bit more just now and THEN you may manage to reduce in a few weeks

e) it isn't your GP's pain or body. He is not being sensible (that's to avoid me being sued...)

[tinwoman in reply to PMRpro]

Many thanks for this its really helpful and clear. Thanks too for taking the time to respond at such length.

[DorsetLady PMRGCAuk volunteer]

Hi tinwoman,

If you are on the correct level of Pred then your markers should be around "normal" levels. That doesn't mean the PMR is in remission, it just means the inflammation caused by the PMR is being controlled. Different scenario altogether- not sure why the doctors don't know that!

If you have symptoms then it's sounds as if you may be having a flare - which means more Pred not less. Blood markers are apt to lag behind symptoms, so you may find when they are tested again they will have risen.

Go back to 12mg and see if things settle, if not, you may have to slightly higher - hope not! But don't reduce when you have symptoms - no matter what doc says!

[tinwoman in reply to DorsetLady]

Thank you DorsetLady having blood tests on Wednesday so if inflammatory markers are up then I'll be able to increase back up to 12. Feel awful at present.

[DorsetLady PMRGCAuk volunteer in reply to tinwoman]

Hi,

"If markers are up then I"ll be able to increase.."

Think you need to discuss with doctor, and agree that if you feel bad you can increase by a mg or two yourself, or stay where you are until you feel better- and not have to wait for his permission! But you will advise him of what you've done.

You're a grown woman, and know your own body better than him, and you're not going to increase unnecessarily, so be polite but firm in getting him to agree that way forward.

Good luck.

[tinwoman in reply to DorsetLady]

Yes you are correct I will take more charge of this and not be overawed by Docs. Thank you for wise words.

[PMRpro Ambassador in reply to tinwoman]

It is immaterial what the blood markers are - SYMPTOMS TRUMP BLOODS!!!!!!

[tinwoman in reply to PMRpro]

Yes I need to take more charge here and not be overawed by Docs telling me must get off steroids quickly as adversely affect osteoporosis and I have been on them long time. Will take your words and that of DorserLady into next consultation with me. Thank you again

[jinasc]

Ask for a Vit D test and do not be put off...........low Vit D can cause aches and pains just like PMR. It is an exclusion test in the Diagnosis and Treatment of PMR Guidelines.

Now before anyone thinks that this summer we cannot be short, yes you can..........

[tinwoman in reply to jinasc]

Thanks jinasc

[Rugger]

My markers went down to normal and I continued to taper the pred, even though my hips and shoulders were aching. Lo and behold, it was a flare of the PMR and my markers went back up again. I agree with all the others - normal markers can indicate you are on the correct dose of pred - not that the PMR has gone away. Symptoms are the key.

I don't know how to create a link, but look at my post "PMR journey in Graphical form" to see what happened.

I'm now on the higher dose of pred and my symptoms are improving!

[PMRpro Ambassador in reply to Rugger]

To create a link, bring up the page you want to link to in another tab. block the whole of the https bit in the bar at the top of the page and press "control C", move the cursor to the post you want to put the link and press "Control V".

Just the same sort of cut and paste you do in word. And you can use it for anything - even bits of text from tinterwebs...

[Rugger in reply to PMRpro]

Thanks, I'll try it now. I'm used to copy and paste / control c & control v, but I wasn't sure about using it for a URL.

healthunlocked.com/pmrgcauk...

There we are, but it looks different from your blue ones! Perhaps it goes blue when it's been sent.

PS It did go blue!

[PMRpro Ambassador in reply to Rugger]

See - easy peasy! I have no idea how I discovered you could do it! There is the occasional thing online you can't block - but I have no idea why!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Think the technical term is -Sod's law!

[tinwoman in reply to Rugger]

Thanks Rugger