PMR with normal markers - a paper from an excellent group

[PMRpro]

I haven't yet read it in detail but the Abstract has enough for me to feel this is important for those of us with this problem and this means I can find it!!

semanticscholar.org/reader/...

Not an easy read but useful

[RachelJDH]

Interesting. My Rheumatologist said at my last consultation that there was now a thought that there wad two types of PMR and one was a PMR type syndrome which didn't mean that the effects for the patient were not equally affecting. I didn't understand the cellular stuff but all information is very important. Thank you.

[PMRpro Ambassador in reply to RachelJDH]

He's a bit behind - we reckon there are possibly up to 4 or 5 different versions and have a few rheumies in the bag who agree.

[Paulagcl in reply to PMRpro]

It seems totally logical since there are more than one version of many conditions.

[Greensleeves]

Excellent PMRpro , I’ll try take from it what I can understand, but it’s applied to me throughout this long journey. Even when I’ve been literally on my knees with pain. Thank you for sharing this with us . xx

[PMRpro Ambassador in reply to Greensleeves]

It is a handy reference to quote at them when they trawl out the "can't be PMR, your bloods are normal" rubbish,

[papadapadoo]

When diagnosed I had normal ESR and CRP of 19--not sky-high by any means. However my PMR is the real thing and I'm grateful to my doctor for spotting it at once. I think it is fascinating that there are different types of this disease, and I wonder if elucidation of the differences might help us understand the disease itself.

[Bcol]

Not one that applies to me as both my markers were very high, but a very interesting read, thank you for posting it.

[Lenore58]

Interesting. Thank you for sharing it here, PMRPro.

[Seekingasolution]

my markers were low so I’ve learnt quite a bit here looking up various words/ ICI ETC here and there ! Looks like they are on the case regarding digging deeper to understand the disease which can only be a good thing.

[Greenthought]

Really interesting - thank you PMRPro.

[AtopicGuy]

Thanks for posting the paper. It would be interesting to know whether the patients with ICI-induced PMR symptoms, but normal blood tests, show up on a PET/CT scan. If the immune checkpoints are disabled only on certain types of muscle/blood-vessel cell, it's possible the PET signal would also be too weak to reveal itself. I also wonder whether the usual age-dependency was evident in the ICI-induced PMR patients, since malignant melanoma is almost as common in the under-50s as those older. I've yet to hear of a rheumatologist in Scotland who believes PMR is possible without elevated blood markers.

[PMRpro Ambassador in reply to AtopicGuy]

I think there are - I do know of people with the diagnosis with normal markers so there must be one or two!!!!

[PMRpro Ambassador in reply to AtopicGuy]

I have just asked a leading light in the Scottish charity. I quote

" ... Not true however to say no-one in Scotland is diagnosed with normal range markers. There have been people attending Dundee support group in this category plus others I have spoken to online. I know of someone who lost sight through GCA without elevated markers and had relapses where amaurosis fugax was always the first sign even though by then she was getting frequent checkups for rising blood markers by an ophthalmologist who became aware of the problem."

[AtopicGuy]

When I asked "how come I'm so much better on steroids if I don't have an inflammatory disease", I was told "Everyone feels better on steroids". Tell that to sufferers of fibromyalgia, CFS, etc.

[PMRpro Ambassador in reply to AtopicGuy]

I wish I knew what makes them think that! I suspect it may be that it depends on how much inflammation there is to take up the pred. I have NEVER felt any surge of euphoria or wellness on pred - if only!!! I did feel so much better 6 hours after my first dose of 15mg - but that was because it didn't hurt as much any more. Just had some periods of difficult to control back pain - and I have been reminded how awful constant pain makes you feel. I eventually managed to get it pretty much under control - but it means 800mg ibuprofen daily, that is all - and the Pain Clinic specialist got all iffy about the potential long term risks for heart and kidneys! Back to the drawing board ...

[AtopicGuy]

Indeed. Not only do my symptoms respond to prednisolone within hours, the benefits last and they increase along with the dose (there's a clear dose-response curve) right up to 30mg, the highest dose I've tried. Yet they refuse to prescribe any more, nor try any other immunosuppressants. I stumbled upon another piece of evidence the other day when I felt a migraine developing and one eye was increasingly sore. I took a single 1200 mg dose of dispersible aspirin with lunch. Not only did the head and eye symptoms subside, but two hours later I could raise my upper arms 45 degrees above the horizontal! This effect then faded within about 90 minutes. I got the same result last week. Knowing that aspirin aids blood flow, I did a bit of Googling and found these links, which I presume you've seen before:

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

"Aspirin, also known as acetylsalicylic acid, irreversibly inactivates cyclooxygenase to suppress the production of prostaglandins and thromboxane A2. The blockage of thromboxane A2 formation inhibits downstream platelet aggregation which in turn mediates an anti-thrombotic effect that forms the basis of using aspirin to prevent ischemic events."

bpac.org.nz/2023/pmr.aspx includes an excellent flow chart and says:

"Monitoring a patient’s clinical response to prednisone is the most important metric to assess treatment success. This might be a self-reported improvement in pain and stiffness, or an improved ability to perform a task that had been impaired, e.g. the patient is now able to lift their arms above their head to reach a shelf without shoulder pain."

I didn't know whether to laugh or cry when I read that!

[PMRpro Ambassador in reply to AtopicGuy]

I've seen the old version of the second link - that is great. And there is at least one person from NZ on the forum who could do with taking it to her doctor!!!! I could have written 95% of that.

We have several brilliant PMR people across the world who really "get" it but their knowledge is lost in translation/communication somehow.

[AtopicGuy]

These days, most doctors are not scientists. Rather than garner evidence and apply logic, they consult look-up tables and tick-boxes. This will always bias them towards stereotypical cases and away from outliers. Scientists love outliers; doctors hate them.

[PMRpro Ambassador in reply to AtopicGuy]

That is more the case in the English-speaking community. To be called Dr in Europe you have to do a research module and write a thesis. And they really do tend to think a bit differently - not perfect but better.

[AtopicGuy]

Indeed. How else can we explain doctors diagnosing arthritis in patients with no diseased joints? Good science and good medicine both involve detective work: gathering clues, constructing hypotheses, and then testing testing them. Merely cramming one's head with knowledge and regurgitating it on demand is not enough. Even slavishly following a flow chart will miss some outliers, if every process within it is not properly understood.

[PMRpro Ambassador in reply to AtopicGuy]

Too lazy ...

Far too many algorithms being used - without them understanding that they can get it wrong.

[AtopicGuy]

The hype is scary: AI is really Artificial Stupidity. It's like the sat-navs that send cars down farm tracks.

[PMRpro Ambassador in reply to AtopicGuy]

Quite - some of the AI generated tripe I've read is scary. And if medics don't understand that it can be wrong, they will pick up even more tripe if they try using it for medical care.