I was advised my gp to increase my steroids from 5mg to 8mg in August due to increased inflammation markers. I had my bloods taken again after two weeks on 8mg and inflammation markers normal.
I have now reduced to 6mg ( 1mg per month)and had bloods taken, my inflammation markers are rising again but just in normal range.
Does this mean when I reduce to 5mg again they will increase and does this mean the disease is still active?
Thank you
Written by
Lynlea
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Our inflammation markers rise for all sorts of things such as the common cold, so they aren’t really a reliable guide to how your autoimmune disease is doing, when under Pred treatment. How you feel matters much more. Those familiar PMR pains - shoulders, neck, groin are a much clearer guide if they start to return. At 5 mgs a slow and careful taper helps the Adrenal recovery it can give you unpleasant fatigue and viral type feelings. I would invest in a pill cutter and do the dead slow nearly stop taper outlined on FAQs. Going up and down in dose as a response to fluctuations in inflammation levels is likely to produce more symptoms. Do be alert for any signs of GCA though such as an unusual headache and or jaw pain when chewing, this needs urgent medical attention especially if accompanied by any visual symptoms. FAQs can be accessed via this page. DorsetLady has provided a very useful guide.
My inflammation markers tend to be high most of the time. I only worry if I do not feel good, I listen to my body not the markers. If I feel fine I ignore them. As SheffieldJane says inflammation markers can get raised for all sorts of reasons.
Anecdotally my first (useless) doctor told me all my blood results were normal. (They weren't, in fact iron was dangerously low.) The doctor who diagnosed me a few months later said my inflammation markers were "normal for my age", but she recognised the symptoms and pred was a miracle. My markers remained above the ideal normal all along, until about the last eight months or so when they really have got down. Have been on pred since 2015! The point of this is to say if I'd been put on enough pred to bring inflammation markers down to ideal, disregarding excellent symptom control, and kept there to maintain that level, I dread to think how much more pred I'd have needlessly taken!
Second SheffieldJane . Just to add that the best way (generally speaking of course, we are all different!) is to treat the symptoms. And, yes, your markers may go up slightly as you taper, but provided your symptoms haven't increased then don't worry about it. If you have no symptoms increased markers may be a warning to taper a bit more slowly, not to increase your dose. Chances are that after only two years your PMR is not in remission yet, only the "remission" granted by an appropriate dose of pred. What you're trying to do is taper to the lowest level which maintains your symptoms at the best level it did when at your higher dose at the beginning, and quite possibly to stay there, with the occasional new attempt at a further taper, for some time. The lower the dose, the slower the taper should be.
You could try tapering by only half a mg at a time, which you can do by cutting a 1 mg tablet (provided it is not a coated tablet) or using 2.5 tablets until your dose is lower than 2.5.
As stated, inflammation markers can be raised for all sorts of reasons , not just PMR…. had you had a cold, stubbed your toe or anything more serious prior to test? And did you have any PMR symptoms? If not, then really another test should have been done before increasing Pred…. Higher blood markers are just a sign you have increased inflammation in your body - not what’s causing it. I’ve just answered another post talking about how mine went high following an operation long after my GCA was in remission….
My markers did fluctuate a bit when I was on steroids, but did remain within normal levels, so no issue.
The criteria for reducing should be how you are feeling in yourself, with bloods as secondary confirmation - not the other way around.
As stated, it would be sensible to reduce more slowly though, with a slower taper and only 0.5mg a time from now on.
And yes, your illness is still active….and likely to be for some time…
If they are rising slowly but steadily that is evidence that the dose at which you are is slightly too low. A single raised value shouldn't result in a kneejerk increase in pred, a sustained creeping up should suggest you aren't on enough.
I would say 6mg is still not quite enough, 7mg probably is, even 6.5mg could be, But don;t go back to 5mg until the markers are no longer rising and are steady where you are, Then 1/2mg at a time and slowly - i.e. not more than monthly - and get the markers checked before tapering again.
Thank you for replying, does look like markers are slowly rising as I taper. I am on 6mg at the moment, have a rheumy appointment next Thursday, but do think they will advise to carry on tapering 1mg every month. My gp has advised to have bloods checked every 2-3 months.
Plain and simple - if the inflammation is rising, NO taper.
You are never heading relentlessly to zero, you are tapering the dose in a process of titration to find the right dose for you at this time. It doesn't mean you won't get lower - just not yet. A holiday from tapering for a few months can have a massive effect and avoid a flare necessitating a return to much higher doses.
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