Advice please

[Tulabula]

Do you think its possible for blood test to fail to spot flare up of PMR. Diagnosed 12 months ago and have reduced by 1mg monthly. Felt really poorly after last reduction from 4 to 3 mg ie. pain to shoulders/hips, feet and hands, lethargy. Had blood test which showed no change/blood OK. but GP decided to decrease dosage by half mg. Now on 2.5 mg and still feel awful. Could the blood test be wrong or is this just ongoing arthritis kicking off!!! Help please

[SheffieldJane]

Oh dear! Yes of course, particularly if we are on Prednisalone and have been for some time. It is more reliable to go on symptoms. Reducing when you are so symptomatic is asking for trouble. The tiny dose you are on is harmless but effective. Our true experts maybe able to supply you with supporting data for your GP. My tapering has never been micro managed by the doctor, they don’t seem to have the time.

[DorsetLady PMRGCAuk volunteer]

Hi,

Blood tests are not infallible- in fact some people never have raised blood markers - which is why we always say on here the symptoms are the key! Every time.

Very often the symptoms are backed up by the raised bloods, but not always and if they are they do have a habit of lagging behind.

If you were only diagnosed 12 months ago your PMR is still very much alive, and would say you have gone below (in fact well below) the level you actually need.

You really shouldn’t have carried on reducing after last taper if you felt unwell - that was yourvsign that all was not going smoothly.

I think you probably need to go back up to 5mg (rather than reduce), get a good grip of the accumulated inflammation and then reduce at only 0.5mg per month provided no return of symptoms.

The fatigue is due to both your illness and your adrenals struggling to get going again - another reason for a slower taper.

Doesn’t sound as if your GP knows too much about PMR.

If you haven’t seen these before it might help you -

healthunlocked.com/pmrgcauk...

rcpe.ac.uk/sites/default/fi...

[PMRpro Ambassador]

In a lot of people the blood markers don't rise while they are still on pred - not known why. Symptoms always trump the lab results.

Just a year in I'd say 4mg is your dose for now - it doesn't mean you won't get lower, just not yet, and it is a very low dose, well below the amount of steroid your body makes itself anyway and is essential to life. Any sensible doctor who knew anything at all about PMR would be delighted and leave you where you are for now with instructions to try a 1/2mg reduction in a couple of months.

[piglette]

It is not the blood markers although they may possibly give an indication it is how YOU FEEL, much more important.

[Janstr]

I had PMR symptoms for about 10 months before diagnosis with PMR & GCA at which time the blood test CRP & ESR markers were really high. Prior to that, around 3 months & again 6 months after the symptoms started, the markers were normal.

[PMRpro Ambassador in reply to Janstr]

That's interesting...

[Tulabula]

Just had another blood test and markers raised much higher so doc keeping me on current dose of steroids. Actually i dont feel too bad this week. Maybe takes me few weeks to acclimatise to each lower dose??? Anyway its staying same for the time being. Very many thanks for your help one and all x

[PMRpro Ambassador in reply to Tulabula]

I trust he is checking next week to be sure it isn't continuing to rise?

[Tulabula in reply to PMRpro]

Hope so. Theyd been dropping sreroid dose each month without monthly blood test. No wonder i felt so poorly

[PMRpro Ambassador in reply to Tulabula]

Honestly - anyone would think it was rocket science! BUT - symptoms are ALWAYS trumps. If you feel less well - then it needs an answer as to why.

Steroid withdrawal starts as soon as you change the dose and then improves steadily with time. It can take a couple of weeks. A smaller drop usually means less discomfort. I like my way (DSNS) because you challenge your body with the new dose just one day at a time - for 3 or 4 times the next day is back to the old dose and your body stops panicking.

[piglette in reply to Tulabula]

The rule should be if you do not feel OK, DO NOT reduce until you do. Blood markers can be a useful backup, but it is you who knows if you are OK or not.