Blood test

[Blues1]

I had a blood test recently to check my crp and esr levels at my request, my last was over a year ago. I have been on pred for over 4 years for PMR. Levels were esr 47 and crp 6, had no advice from doctor on results , I have not been feeling so well again. I am currently taking 6 mg pred , can't get lower although I do try. I also have diagnosis of Fibro so it's difficult to know whether my flares are fibro or pmr or both! Some advice over my blood levels and dose welcome.

[DorsetLady PMRGCAuk volunteer]

ESR is certainly running high, CRP is okay… but as you say but difficult to know if ESR is raised by PMR or Fibro- or done thing else completely…. And remiss of GP not to comment.

If you think it is a flare of PMR - then this link contains usual advice..

healthunlocked.com/pmrgcauk...

As you seem to be stuck around 6mg have you tried a slower tapering plan and reducing by only 0.5mg a time? Or considered it might be adrenals stuttering?

Links re plans -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Link re adrenals -

healthunlocked.com/pmrgcauk...

[piglette]

Doctors only seem to contact you if there is a problem. Otherwise you have to check with them.

[PMRpro Ambassador]

Fibro SHOULDN'T raise the ESR - but a load of other things can, Cold? Any signs of anything else?

[Blues1 in reply to PMRpro]

Is it the crp or esr levels that are more significant for PMR ?

[PMRpro Ambassador in reply to Blues1]

Depends on the person but one group felt that ESR has a definite role in monitoring management of PMR.

[Mayadill in reply to PMRpro]

Personally my CRP does not correlate. It was 48 at the start of October. I was happy as a lark on 4 mg. Can't say if it was predictive because 5 days later had the booster and body didn't like that. Was there anything else going on? All I can think of with normal other things is double cataract surgery in the summer which I'm guessing counts as trauma. In Feb the CRP was down to 25 and I was flaring wildly, still vaccine-ridden and miserable.

[PMRpro Ambassador in reply to Mayadill]

Neither ESR nor CRP are exclusive to PMR - they are both indicators of inflammation but that can be anywhere in the body. A chesty cold can send CRP into orbit and so can a muscular insult in surgery or trauma.

A single raised level WITHOUT accompanying symptoms isn't a sign of a flare - the blood test should be repeated to establish if there is a rising trend - which might mean it is a flare developing, but even so, not necessarily.

[Pixix]

fibro didn’t raise my ESR or CRP, just for info. PMR raised my CRP to 7, can’t remember ESR, but rheumy said 7 is low. Just for your info. It may help others to help if you say how you’re not feeling well…is it pain, if so, where, or fatigue, or….

[Blues1 in reply to Pixix]

Pain in hips and lower back, shoulders, weakness and fatigue, brain fog, all fibro symptoms I know, but I get puffy fingers, feet and abdomen too when symptoms at the worst. Also waking in night and unable to sleep , legs uncomfortable in bed, restless. No rhyme or reason it seems, some days I'm better then for no reason back to feeling awful.

[PMRpro Ambassador in reply to Blues1]

But they are also PMR symptoms when it isn't being managed

[Pixix in reply to Blues1]

The rheumy I saw asked me how I sleep…I said very bad, about 4 hours each night, there yiu are, he replied, it’s definitely fibromyalgia. Actually, I said, I think a lot of it is due to sciatica on one side & trochanteric bursitus on the other…& I wake myself up snoring if I sleep on my back. He didn’t reply. I get puffy feet & fingers a lot, but very stiff too. That part, for me, is definitely osteoarthritis, which is getting a lot worse as I taper the steroids. My doctor said the steroids were masking the level of osteoarthritis. Sending hugs, S x

[Blues1 in reply to Pixix]

Thank you for the comments, I don't have signs of osteoarthritis, I have always had hypermobility which apparently has had adverse problems as I've got older too im nearly 66, as I still have the flexibility but it does me no favours causing pain in joints and soft tissue. I do try some gentle pilates but have to be careful not to overstretch but do it to try to improve core strength so less strain on my back to try to lessen the pain. Feel like an old crock most days.

[Blues1 in reply to Blues1]

Thank you for reply, sometimes just sharing with others helps . Frustration with the pain and never feeling completely well is wearing.

[Pixix in reply to Blues1]

Ah,that’s interesting, I have hypermobility, too. As a child I just enjoyed the wonderful shapes I could bend my body into, & putting my foot behind my head etc etc& was labelled double jointed, & as a teenager had a lot of hockey injuries & was labelled accident prone! But about a year ago, my joints started to dislocate & subluxate, & my doctor asked me if I’d previously been diagnosed with hypermobility. I said, no, & I don’t need anything else & he said you’ve had it all your life I expect! Recently found out my Mum had it (from only remaining elderly relative), & my Mums cousins, toooo! Mine was OK until it started with the joint dislocations! Fell off the rockery two weeks ago & dislocated 2 toes. Week before my wrist was nearly out of socket just opening a door…but I’d twisted my wrist. I’m 66. Due to see a different rheumatologist soon-ish to see if I have hypermobility Ehlers Danlos syndrome (which also has dizziness (reason I fell off rockery) & pain & stiffness & fatigue as symptoms!! Don’t worry, at 66 & a half, I am that old crock, too! Hugs, S x

[Blues1 in reply to Pixix]

I have balance issues , have to hold on to something to do stairs, slopes, hills , or I feel wobbly . Feel ridiculous at times!

[Pixix in reply to Blues1]

Oh, yes, me, too, I fall quite often, but more than that, just sway around & bounce off the furniture, radiators etc! Just having a proper banister rail fitted at home!

[PMRpro Ambassador in reply to Pixix]

In the UK I had a supposed MSK specialist physio tell me there was nothing wrong with my back as I could touch my toes and he couldn't! I said I wasn;t responsible for his hamstring problems ... Every physio here and the head of rehab has identified hypermobility in seconds.

[Pixix in reply to PMRpro]

that’s funny…just because he couldn’t do it!

[PMRpro Ambassador in reply to Pixix]

I slept badly in the early stages of PMR - the stiffness kept waking me up! I wonder if they have ever LISTENED to patients with both! Or either come to that ...

[Pixix in reply to PMRpro]

I don’t think so, do you? I’ve still got a flareup, shoulders & hip/groin area dreadful, & I can’t roll over in bed…but it’s getting no worse over past week, & I am down to 1mg….hm…

[PMRpro Ambassador in reply to Pixix]

A few have - but a lot haven't as is evidenced by the rubbish they come out with! Like that - not being able to sleep is proof of fibro! Is it h^££!