PMR flare symptoms but bloods clear.

[GarryB63]

Hi AllI have been taking pred for 2.5 years for PMR and after a couple of flare ups in that time have managed to taper to 2mg per day. In the last few weeks my shoulders, hips and back of my knees have started to fell stiff and sore. My hamstrings are also very tight. I assumed I was starting another flare but my ESR and CRP are 2 and 4 respectively. I also often feel very fatigued and worn out, without really doing anything.

I'm a 59 year old male in the UK who was first diagnosed in 2017 with PMR and until then was a competitive triathlete, so I do try and keep fit which nowadays involves mainly cycling.

Waiting to talk to my doctor but in the meantime would welcome any feedback if anyone else has had this happen- symptoms of flare up but no markers in the bloods.

Thanks

Garry

[DorsetLady PMRGCAuk volunteer]

Could be a flare -for many their raised inflammation markers lag well behind symptoms.

Would say the fatigue is probably down adrenals struggling - and sometimes adrenal insufficiency can cause muscle /joint pains -

healthunlocked.com/pmrgcauk...

[GarryB63 in reply to DorsetLady]

Thanks DorsetLady, I will read your article and then educate my GP 😀

[DorsetLady PMRGCAuk volunteer in reply to GarryB63]

Good luck with that then 🤦🏻‍♀️

[PMRpro Ambassador]

The markers can lag behind a flare - they only rise when enough inflammation is present for long enough to make the liver produce the proteins in response which then increase the parameters. The fatigue is almost certainly a sign that the adrenal glands haven't caught up with the reduction of the oral dose and adrenal insufficiency is another cause of joint/muscle aches and pains and especially if you have tried to do a bit more than your body is up to recently.

[GarryB63 in reply to PMRpro]

Thanks PMRpro

[Polygolfer]

Hi Garry,

I am in a similar situation. Because my blood was clear of any inflammation markers and clean on other counts I was set on a fast track tapering from 20mg to zero in 5 weeks. However after a week of cold turkey have had to take up 5mg and tapering this time will be much slower. I am on strict anti inflammatory diet, don’t drink, and exercise and stretch daily - also play 3 or 4 rounds of golf weekly.

So clean blood is no passport to freedom. Lots still needs to be researched and understood about the underlying causes of PMR.

Cheers and best wishes, Michael

[GarryB63 in reply to Polygolfer]

Thanks Michael

I'm also a golfer but haven't played for 3 weeks because of the shoulder pain.

My tapering plan has been 1mg each month since June last year following a flare which the doctor didnt do bloods for and just bumped my pred up to 15 and then 12 and then the monthly taper of 1.

Reading other threads this tapering seems to be too bigger drop particularly at lower doses. Didn't even know pred tablets went below 1mg!

Cheers

Garry

[DorsetLady PMRGCAuk volunteer in reply to GarryB63]

Didn't even know pred tablets went below 1mg!

They don’t, but you can either cut plain uncoated one to get 0.5mg or mix and match with 2.5mg & 1mg….

[DorsetLady PMRGCAuk volunteer in reply to Polygolfer]

20mg to zero in 5 weeks.

Bonkers! Obviously you doctor didn’t understand PMR - might be okay for acute occurrences like asthma attacks or COPD but not our illnesses.

[PMRpro Ambassador in reply to Polygolfer]

Up to a fifth of patients with PMR symptoms don't have markers that are out of the "normal range" - but they can still be raised for YOU. Normal range is a range of figures that covers 95% of a very large population of apparently healthy people. It is not a range that is fine for an individual. And 5% of patients are outside that range anyway. It is known that some patients simply do not mount the acute response that raises those particular markers which are very non-specific anyway. In this context, it isn't the cause that needs identifying but a better diagnostic marker.

And doctors need education - about diagnosis and management. At least they let you go back to 5mg - is that working? You will need pred as long as the underlying autoimmune cause of the symptoms is active - and that can be a long time: years, not months ... And actually - fewer than one in 5 manages off pred in 12 months. When they do they are at a higher risk of relapse.

[Polygolfer in reply to PMRpro]

The GP doctors here in the UK follow an NHS protocol of treatment and, if needed, subsequent referrals to rheumatology clinics. There are circumstances that allow them to divert from the protocol and they thought I had a decent chance of being that case. The 5mg a week reduction worked well from 20mg to 5mg, but the last step in my case was just too fast. In fact, I had just returned from a South Africa golf tour and I wasn’t feeling that bad and managed to play 4 rounds of golf in that first week on zero, but started feeling increasingly stiff, very tired and the muscle and joint pain started to return so we switched the 5mg back on a couple of days ago, and I immediately felt much better. It may have been a combination of over exertion and withdrawal symptoms but whatever it was, that’s my lifestyle, so it just wasn’t working.

So thanks for the insights, as you said it is all very individual dependent, so let’s see how things progress.

[Polygolfer]

Hi Garry,

Indeed I agree the tapering in my case was too drastic. A friend of mine at the club who is a top Rheumatologist and researcher in London did say that once on steroids the course is normally not less than 12 months. So, we did try a rather drastic approach as I handled all the weekly 5mg reductions very well whilst maintaining exercising, playing and travelling but in hindsight it asked the body for too much…

Best wishes, good to exchange views of a more positive and constructive nature!

[JaiSea]

I too, was a relatively fit man, just into my sixties, albeit a diabetic, when PMRGCA struck. I fought the taper down to zero over two years with ‘clear’ bloods, although I have to inject insulin because of the pred. The good advice on here convinced me that it was too rapid, and the problems I was experiencing would be eased by re-establishing my steroid dosage of 5mg, and to consider the illness as a much longer term issue. Not all the symptoms have disappeared and my insulin units have increased but I’m feeling better and realise that my medical advice was flawed, not from anything but the struggle for knowledge on this debilitating illness.

[GarryB63]

A quick update. My cortisol test taken at 8:30am was 326 nmol/L. A quick 'goggle' and it seems its a tiny bit on the low side. I'm still on 2mg pred daily dose (took it after the blood test). Symptoms are worsening and I'm trying to wait for a referral to a rheumatologist before I increase pred.

[PMRpro Ambassador in reply to GarryB63]

ncbi.nlm.nih.gov/pmc/articl...

suggests that that is fine for someone on 2mg pred - there is a wide variation in basal cortisol levels but under 100 is definitely insufficiency, above 450 definitely normal, I don't think I;d be worrying greatly about my adrenal function - although whether you would have a normal response in an emergency is another matter but it is said that it can take up to a year after being off pred entirely for that to normalise.