Blood tests negative

[SapoKiko]

Hello again friends, and Happy New Year!

I am diagnosed with PMR by symptoms only - all blood work including ESR and CRP are negative. Just wondering if anyone else had this experience?

Symptoms leading to diagnosis - Bilateral pain in hips and back, even shins (weird), fatigue, malaise lasting 6 weeks. And the fact that Prednisone made me feel about 90% better in a couple of days.

Met my rheumy only once, will see him again soon. He tells me it's not always that the blood markers are there, you have to go by the symptoms and reaction to Pred.

He seems experienced, but according to this group, wants to taper much more aggressively (2.5mg every 2 weeks). He seems a reasonable chap and wants me to be "in control" of dosage, which is a good sign. I'd like to try DorsetLady's "Simple Taper" plan.

Let me know please, if anyone else had negative bloods.

Cheers,

Kiko

[DorsetLady PMRGCAuk volunteer]

Anywhere up to 20% of patients never have raised inflammation markers….so your Rheumy is quite correct in that aspect….and your reaction to Pred support PMR diagnosis.

But have to agree he may be too optimistic in trying to get you to reduce his way, some patients may be able to do that, but not many….so you need to discuss this with him.

Try and impress upon him, that you would rather try a slower taper (time-wise and dose-wise) so that you don’t risk a flare. If he’s experienced and empathetic, hopefully he’ll agree.

[PMRpro Ambassador]

Quite a lot of us on the forum - it is said up to 20% can have ESR and/or CRP that are in normal range. But that doesn't mean they are normal for you - that isn't a range that applies to each of us, it is a range that will be found in 95% of the large study population, usually 10,000 patients of all ages who are apparently healthy. My personal normal ESR is in low single figures, when it ran at 16-18 for weeks during a major flare no-one even noticed because 20 is the top of the range. The 2.5mg per 2 weeks is a bit hefty, more usual would be per month, but it may well work OK and if it does you will get the dose down to your personal dose quickly. Doing it with one of the slowed tapers will make it more comfortable - but if it starts to go pearshaped, slow down and even stop if necessary. It will just be a delay, not a full stop.

[Kendrew]

I am one of those in the minority who have never had raised inflammatory markers...not even when diagnosed. They've always been stable and within normal parameters.

[Bagaof4]

Yes. I also had negative blood tests for SED and barely over the norm 10.4 for CRP. Luckily my GP and then my rheumatologist went by my immediate response to the Pred. I was in such pain and could barely walk or dress myself. The Pred brought me relief in a matter of about 6 hours. Not sure why some of us don’t have high inflammatory markers. Weird.

[herdysheep]

My markers were raised at diagnosis but have not been so since according to 'normal', but I keep a note of results and how I am feeling, and can see when they are raised by my 'normal'.

[Paul76]

I was in exactly the same position as you. I was diagnosed on symptoms only by my very helpful GP. As I had never heard of this condition I was completely guided by her on tapering. I went from 15mgs to 8mgs in 3 months and I am still suffering a lot of pain and stiffness because of it. I gradually increased to 15mgs and have been on that for 6 weeks with only slight improvement. My next review is in a couple of days and using the advice from this forum I increased by 5 mgs a few days ago. Hopefully I will be able to tell my GP that it is helping and will stay on 20mgs for a while and then adopt the very slow tapering method. I have learned so much from this site and hopefully will not have to go through this again. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to Paul76]

Let’s hope your GP will also learn from your experience- her initial tapering plan was much too fast.

Trouble is many GP are only used to prescribing Pred for use short- term use for flares of other illnesses like asthma, COPD etc, not long-term use in PMR or GCA. Completely different scenarios.

[SapoKiko]

I know it's lazy of me but wanted to say thanks all at once, to ALL who replied with their comments and experience. Glad to be part of this community! B-)