Blood test readings now normal.: Hi everybody. I've... - PMRGCAuk

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Blood test readings now normal.

redlab profile image
19 Replies

Hi everybody. I've been registered for a while but have not yet posted anything so here goes. Following a period of lower back problems in May 2019, I had pains and stiffness in my lower legs and thought that it was sciatica. It did not improve and I began getting pain and stiffness in my shoulders and neck which gradually worsened to the extent that I could hardly get myself out of bed. My GP suggested that it was Polymyalgia Rheumatica and arranged for blood tests which indicated that it was PMR. I was prescribed Prednisolone 15mg daily which greatly improved my stiffness and pain within 4 days of starting it. I have tried reducing the dosage on two occasions without success, the first occasion was to 12.5mg after 9 weeks but PMR flared after a few days and so after a further period on 15mg I tried a reduction to 14mg. After a month on 14mg a was feeling so bad that I went back on 15mg. Within a day I felt so much better and so my GP prescribed 15mg for a further 3 weeks and then perhaps 14 mg again. I had recent blood tests which indicated that the ESR and CRP readings were both 2 which I understand is a quite normal reading so am I right in thinking that the inflammation is gone as those readings were 44 and 46 respectively when first tested in August 2019 when I was first diagnosed. The PMR is most definitely not gone so are the blood tests of any value for this condition?

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redlab
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

The blood tests only show that the inflammation caused by PMR is under control.

Unfortunately the steroids do nothing for the underlying PMR, so no it’s definitely not gone!

Blood tests have limited value, but doctors do seem to place a lot of credence on them - symptoms, or lack of them, are always the key.

Hi redlab, welcome. It sounds like you may be a candidate for a month at 20g, the guidelines suggest up to 25mg. The pred may be clearing out most of the new inflammation but you may need to discuss with your gp trying 20mg for a month then 2. 5mg drops and if necessary 1mg. If you Dr isn't comfortable perhaps a referral to a rheumatologist. Perhaps ask for a good one with a post with general area.

We always say symptoms trump bloods for pmr and if you had relief at 15mg it suggests it is.

PMRpro profile image
PMRproAmbassador

If the blood tests are low that shows you are on enough pred to manage the inflammation. The PMR is still there but the pred is controlling the symptoms. They remain of value to see if a return of symptoms is because of increased inflammation - usually due to too low a dose.

redlab profile image
redlab in reply to PMRpro

Thanks for the info on the value of blood tests in relation to PMR.

With regard to tapering my prednisolone, I am thinking of following the slow tapering method which you posted some time ago as it seems that I may be considered as being 'Steroid resistant'.

I seem to be fine on 15mg with very little problem with pain or stiffness provided that I don't overdo things. As mentioned in my initial post, a reduction to 14mg caused me to feel so very tired with a return of the pain and stiffness in my legs and shoulders which disappeared after a day of resuming a 15mg dosage.

Anyway I'll speak to my GP and talk him into agreeing to it.

regards

Redlab

PMRpro profile image
PMRproAmbassador in reply to redlab

How quickly did you deteriorate in 14mg? If it was immediate that may have been reaction to the change and a couple of days patience might be profitable - if it imroves it was that, if it gets worse the dose is too low but that rarely happens on day one.

redlab profile image
redlab in reply to PMRpro

I was on 14mg for more than a month. I wasn't too bad for the first couple of weeks but it eventually became intolerable and so I went up to 15mg again and was feeling good in a day.

PMRpro profile image
PMRproAmbassador in reply to redlab

Fair enough - most likely just a tiny bit too low for now.

SheffieldJane profile image
SheffieldJane

As DorsetLady says re blood test results. You might be unusually sensitive to Pred and do tiny drops of 0.5 ( get a sharp pill cutter for those tiny 1 mg tablets). Good luck!

Joanbill13 profile image
Joanbill13

I am in exactly the same position as you. Was going to put a post on here asking for advice. Diagnosed sept 2019. Started on 15mg. Last bloods December normal. Really don’t want to increase my dose of Pred. Currently tapering 12.5 to 10 and taking paracetamol for the pain. GP says I haven’t got PMR now!

PMRpro profile image
PMRproAmbassador in reply to Joanbill13

Your GP is just plain ignorant (I revised what I wrote first of all) - do they tell their diabetic patients they don't have diabetes any more because they are on insulin or RA patients the RA has gone because their symptoms are being well managed with a monoclonal antibody? I think not ...

Joanbill13 profile image
Joanbill13 in reply to PMRpro

Thank you for reply. She was so,good in the beginning sept 2019. Now this comment. She is happy for me to stay on 12.5 for now so,will plod along with this and paracetamol as I can manage the pain and fatigue. Felt so good on 15mg but want to loose the moon face and avoid pred side affects.

PMRpro profile image
PMRproAmbassador in reply to Joanbill13

I lost the fat face by cutting carbs drastically - it does help a LOT

Joanbill13 profile image
Joanbill13 in reply to PMRpro

That's probably where I'm going wrong then. Was trying hard before Christmas but been eating more carbs during and after festivities. Also more wine. Still eating good stuff but adding cake and bread more than usual. Thanks again for reply

Must try harder as my school reports used to say!

PMRpro profile image
PMRproAmbassador in reply to Joanbill13

I can tell I have been finishing up the xmas left-overs ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Joanbill13

GP talking rubbish!

Bloods are only ‘normal’ because Pred is controlling inflammation- not because PMR is gone.

If you are having pains then maybe you have gone below level you need. What sort if pains? Similar to pre diagnosis or something different?

If you’ve gone below level you need maybe go back to 12,5 get rid of the pains, and then try tapering again, by 1mg this time not 2.5mg (although a recognised taper very often too much).

No point continuing to taper - if it is a flare, it will only get worse.

Joanbill13 profile image
Joanbill13 in reply to DorsetLady

No the same pains. Neck, top of arms, each side of pelivis, top,of legs. Odd nerve pains in groin and neck. Some fatigue because I keep doing more than I should probably. I feel it's PMR having read all I can on this site.

I felt so,good on 15mg but feel I must get down to lower dose of pred. Thanks for your reply. Will stick to 12.5 a bit longer even tho it's not as good 15.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Joanbill13

If the pains are same as pre diagnosis, then that's a flare. Which means you are not taking enough Pred.

Plus as you said yourself you are doing too much, you can’t - the PMR is still there - so you need to start pacing yourself better. Not easy, but you have to learn to.

How you felt on 15mg is what you are aiming for all the time - not always achievable- but as close as you can get..

“I felt so good on 15mg but feel I must get down to lower dose of pred.”

No - you don’t HAVE to get to a lower dose - what you are aiming to do is get to the LOWEST dose that controls your symptoms. For some that takes longer than others - depending on different things.

Don’t pressurise yourself to lower your dose - there is no point in being on a dose that is not controlling your symptoms.

Have a look at this, might give a better idea of your illness - healthunlocked.com/pmrgcauk...

Joanbill13 profile image
Joanbill13

Thanks for your advice. Will give LOWEST dose a shot

candy28 profile image
candy28

i am so glad to see someone else started with a backache, my gp has only suggested i may have this for less than a week so still tryinging to get my head around it all :(

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