Chronic prednisone use and inflammation markers

[kellykel]

I have always been on prednisone the last three years for clinical diagnosis of GCA. The first time my inflammation markers were checked was about three months after brain surgery for intercranial aneurism clipping. Prednisone tapers were given to heal.

I was struck by how much the steroids helped my pain, but after a few weeks was told I no longer needed it.

I was told up-front the aneurism surgery would not help my pain, but I was willing to do absolutely anything to get relief after three months of excruciating symptoms.

The GCA symptoms had come on three months before after intense viral flu. I was directed to an ENT doctor (long story, but virus had caused white legions down my throat and esophagus.

The aneurysms were found serendipitously through a scan of my throat.

I did the surgery hoping they were wrong. They weren’t.

Then would go to Urgent care a beg for taper packs.

Bottom line, I was tested that December and told my markers were normal, however I had classic GCA symptoms and finally was given prednisone.

I did taper to 0 along the way - to be “fresh” for Mayo and was at 0 mgs for 3-4 weeks before they tested. Again - markers were normal.

I now have intense muscle pain and was thinking perhaps I now have PMR. I understand inflammation markers are how this is diagnosed.

I am currently on 24 mgs and have been around this 17-24 for 2 years now.

Would an inflammation marker test pick up increased inflammation at this point?

Thank you.

Don’t know what I’d do without the experts here.

[PMRpro Ambassador]

Impossible to say since 1 in 5 patients with PMR and GCA never have blood markers that rise above the normal range. That doesn't mean they aren't raised for them but if your normal is very low single figures they can be considerably raised and still lie "in normal range". And some patients don't have raised markers while they are taking any pred.

But if you are on 24mg/day pf pred - that is the top end of the range of starting doses for PMR. It would be surprising if it were PMR - but not impossible.

[kellykel in reply to PMRpro]

Ok, thank you. Must the symptoms from the recent Silent Thyroiditis diagnosis.

[Hidden]

Hypothyroidism can certainly cause muscle weakness which for me included pain and a heavy leg feeling. Presumably you are in hypo phase?

[kellykel in reply to Hidden]

No, I’m in hyperthyroidism-rapid metabolism; heart palpitations; severe muscle pain, fatigue, mood disorders from hormones not working right.

Pretty awful.

[Hidden in reply to kellykel]

Oh dear. That won't be making you feel better that's for sure. I hope you get to the bottom of your current leg "blip".🌻

[kellykel in reply to Hidden]

Thank you so much. Quite a depressing part of my journey right now.

Depression and anxiety are quite overwhelming.

[Hidden in reply to kellykel]

It's really not surprising. You.must be all over the place. Hang in there it will get better xx

[SheffieldJane]

Gosh what a horror story! Your inflammation markers are going to be absent. The medics will/ should diagnose on symptoms. I hope this happens for you,

[kellykel in reply to SheffieldJane]

Thank you Jane. They’ll be absent because I’m on prednisone?

How did you all manage your inflammation markers if you’re also on prednisone?

I hear many say they go in and their markers are up or down AND they are on prednisone.

So confused 🤷‍♀️

[Hidden in reply to kellykel]

Hi again! Some people never have high markers full stop. When I was diagnosed I was at 32 on crp (I think- but doesn't matter...just above normal range). Then after a month at 15mg they were in the top end of normal range as the pred reduced the inflammation. I then reduced 1mg a month and felt worse every time (didn't know any better), by 8mg I had markers at 54. Back up to 12mg by gp, referred to Rheumy then put up to 14mg as markers still in 30s until 2mths later when inflammation controlled again. Hence I was still on pred but had in 8 mths raised markers, normal markers, raised markers, still raised, then down to normal and now crp at 1.6 and pred at 6mg with a dmard for 2yrs. It is complicated but simple. You go by how you feel. If you drop 1mg and after 2 to 3 weeks still feel like you did when pred kicked in the first week or so, then pred still working. If symptoms return after 2 to 3 weeks on new dose it's not enough​ pred and you need to go back up and get it under control. Sometimes it can take 2 or 3 attempts to drop 1mg. That's why people gradually introduce a new dose using the dead slow nearly stop methods. I have been on 6mg since at least last sept because after 4 or more attempts dropping 1mg then 0.5mg over the course of months, my symptoms came back.

[PMRpro Ambassador in reply to kellykel]

It depends as Poopadoop says, everyone is different. Some people never have markers that rise out of the normal range in the first place anyway, about 1 in 5 have that problem. It often makes getting a diagnosis difficult but in fact they may be raised for YOU, but still below the top of the normal range found in a large population (about 10,000 levels from healthy people are used to find the normal range, men and women vary too). Some find the either ESR or the CRP tracks their symptoms and others find that they can have symptoms long before the levels are seen to rise, as much as 6 months difference has been reported! And for a few, the pred is enough to stop the liver producing the protein that is the cause of the raised marker. That is especially the case where the pred does work eventually during the day but mornings are particulalry bad.

[kellykel in reply to PMRpro]

You are always so helpful! Thank you!

[kellykel in reply to PMRpro]

And that explains why I never get relief until the afternoon. Thought I was the oddball.

[PMRpro Ambassador in reply to kellykel]

One way of making mornings better is to try splitting the dose, about 2/3 in the morning and the rest later so that the anti-inflammatory effect lasts over to the next morning. It can last anything from 12 to 36 hours - and if you are under 24 hours you will be stiff and in pain in the morning. A new batch of inflammatory substances is released in the body every morning about 4-4.30am. The longer after that it is until you take your pred the more inflammation is created and the more the pred must do so it takes longer. The ideal time to take pred to minimise morning problems is 2am, then the pred is at its highest when the inflammatory substances are released and they don't get a hold in the first place. But for some people taking the pred that early means the pain returns later in the day - taking the second dose of pred about 1-2 hours before the pain is expected to appear to give it time to get into the bloodstream.

[kellykel in reply to PMRpro]

Ok! Thank you. I so appreciate your help.

[PMR2011]

Managing the Prednisone is really more about symptoms than markers. Even though medics believe the disease is not active when markers are low our symptoms tell us otherwise. In your case you might not want to start tapering until the pain has been managed for 3-4 weeks.

Hope you find relief soon!

[kellykel]

Thank you for the wonderful advice.

[Amayeee]

That is a great question. I too was wondering if markers show up while on prednison. I will be watching 👀 replies.

[PMRpro Ambassador in reply to Amayeee]

Have you looked at my reply much further up the thread?