All test normal

[beringer]

All of My labs are good for GCA & PMR, But still have days where I can hardly put one foot in front of the other.. Anyone else feel this way? Happens often.. Thanks, Betty Snell

[SheffieldJane]

Yes Betty! That is the nature of the beast. I wish that blood test results were a true indicator, but they are not. Symptoms rule, let them be your guide. Rest more, do less. The bad days tend to follow doing too much. Pace, pace, pace. X ( or stress).

[Linny3]

all my labs have been good since the beginning.( 2 years) They were up the very first time taken and normal since then. Yet, like you I feel horrible some of the time. The feeling of ill health NEVER leaves.

[markbenjamin57]

Greetings Betty

I can relate: my inflammatory markers (ESR & CRP) have been pretty well 'Normal' throughout my PMR journey of 3-ish years, and CRP only slightly raised before being prescribed Preds for PMR. That said, I understand that Pred does in fact modify / lower CRP levels especially, since that is what it is intended to do.

I'm not an medic but, from experience and shared wisdom here, there are 3 main (but not always concurrent) elements with PMR symptoms.

First: the classic, initially crippling Pain and Stiffness - which hopefully are controlled by the Preds to a level which is tolerable.

Second (and from experience): bouts of DF (Deathly Fatigue - physically and mentally), which can seem to descend regardless of Pain and Stiffness levels +/- and / or despite relatively normal inflammatory blood markers.

My amateur (I stress, Amateur) conclusion is that even if PMR Pain and Stiffness are managed relatively successfully by the Preds, the DF (Chronic Fatigue Syndrome?) can still hit you hard, regardless. From what I've read, the DF seems to be a common experience of people with Auto Immune diseases of many types. PMR is known for its 'Heterogeneity in disease course'. In other words, symptoms can vary in intensity and duration independent of our best efforts to manage the process via even the best Steroid tapering regimens (e.g. DSNS), good diet, energy pacing, etc.

Also: a few of Us Lot here report periods of DF when / if reducing Pred dosages below a level that is necessary to support the body's natural (but struggling) Cortisol production. And so, DF might also be due to temporary adrenal insufficiency whilst the system catches up.

And.. other aggravating factors in the PMR / Pred management / DF Symptoms Equation can include any or all of contextual factors like Viruses, Infections, Comorbidities, excessive Stress, and even cold, damp weather in conspiracy with all of the above. That said, I'm sure the forum Aunties (experts) will be along soon with their thoughts and opinions too.

Yep: establishing the Cause and Effect link with PMR and DF is a confusing and frustrating equation to solve. On the positive side: the dreaded DF can, and often does lift - so long as you learn to roll-with-it and not fight it. In my experience, Physical and Mental Rest and Relaxation are the best therapy for coping with DF when nothing else seems to work - if you can. To quote an old saying: 'This, too, will Pass..'

Hope this helps.. try to keep positive in the meantime

'Uncle' MB

[Daisychain12 in reply to markbenjamin57]

Uncle Mark. Oh the DF. It’s ghastly. Xxxx

[Hidden]

Uncle MB has said it all! I’m afraid it’s the nature of the beast but more so at lower doses. Rest & Pacing yourself is the only way........

MrsN

[Jackoh]

Yes my markers have always been normal( although normal for one may not be normal for someone else!) but never a cause for medical concern. And yes agree with all the above as Angela says pacing and rest is the only solution. Xx

[PMRpro Ambassador]

Blood markers are not a reliable assessment for many patients - for some they don;t rise while on pred. Symptoms are always trumps. Not the lab results.

[markbenjamin57 in reply to PMRpro]

Trumos PMRpro? Do you mean TRUMPS? Oh no, better not mention him here or there'll be a right old do...

Happy New Year to you and your 'Lot' - best wishes for a better one ahead

[PMRpro Ambassador in reply to markbenjamin57]

See - I struggle to think it never mind write it...