High inflammation level

[Kathb1]

Hi I was diagnosed with pmr in oct 2017 and started on 15 mgs of pred at the moment I am on 12.5 one day and 10 the next my dr does not want me to lower any more just yet as I have just had another blood test and my inflammation level is at 93 which she said is sky high I have just been for another blood test to check my levels again she seems quite concerned. My pain is under control at the moment but I am so fatigued. Has any one else had a level in the nineties.

[Pat9442]

Mine was 115!

[Hidden in reply to Pat9442]

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[DorsetLady PMRGCAuk volunteer]

Hi Kath,

No, mine was quite low at 58 considering I had GCA for 18months and no Pred!

However, a high ESR can be caused by lots of things. Not just PMR or GCA, have you got anything else going on that might cause it? That’s why we say...the symptoms are the key. How are YOU feeling PMR wise? Apart from the fatigue, and that’s probably due to the Pred, but I suppose it could be a sign of something else. Is Dr considering that?

Hope it soon gets sorted, and please keep us informed.

[Kathb1 in reply to DorsetLady]

Hi Dorset Lady the dr seems a bit stumped at the moment but is going to refer me to the hospital if my bloods come back that high again I also have huge swellings above my collarbones and I am going for a scan on that area.

[DorsetLady PMRGCAuk volunteer in reply to Kathb1]

Hi again,

would think the high readings are probably down to that as much as anything.

[piglette]

Hi Kathb, what marker was 93 your ESR or CRP? I normally ask for a printout so I can see what is going on over time which has been useful. I just ask the receptionist.

[Hidden]

For me fatigue was a key symptom of PMR pre dx and continued for a while. I still heydays of bone numbing fatigue but not an everyday thing. Mine was 58 after first few months of reducing. That was higher than 32 at diagnosis. I was put back to 15mg and referred to rheumy. I suspect your GP might be doing that too. Have you had any viruses in past 2 months? The markers usually lag behind symptoms. Hope you get to see GP soon.

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DX june2016

Pred 8mg

[PMRpro Ambassador]

Has your doctor not suggested you go back to 12.5mg to see if that might help? Some people find taking 2 such different doses on alternate days is hard on their body and taking the same dose every day really is better.

ESR is a very non-specific test and can be raised for all sorts of reasons. And PMR is not the disease - it is the name for a set of symptoms that can be caused by all sorts of underlying disorders.

[Rugger]

Is this your CRP or ESR? My CRP at diagnosis was 78 (top of normal range = 10). My ESR was only 45. I wouldn't want to be reducing the pred if I thought that the inflammation was due to the PMR - I'd be asking my doctor if I ought to be increasing! See what the latest result is and then discuss with your doctor.

Unfortunately, fatigue is one of the symptoms of the autoimmune disease and we have to pace ourselves. Have you read DorsetLady's advice for newbies? It contains links about pacing and lots of other useful information. Click on her name and you'll find her posts.

If you have a look at 'Tapering steroids' on the right of this page, you'll find better, slower taper plans than alternate day doses. (One such is 'Steroid Taper Web App' which has many schedules listed - devised by Sandra, who has PMR.)

[Janstr]

My ESR was 96 & CRP 68. I had had undiagnosed PMR for 10 months & then developed GCA symptoms. After the blood results I was immediately put onto 20mg pred which a week later was increased to 40 when I still had symptoms.