Raised CRP

[Rebsy]

Good morning . After some advice/ thoughts from you wise people. My CRP has been raised over my last 3 blood tests ( currently 37 and ESR 16) My Rheumatologist is arranging a repeat PET- CT ( had one when first diagnosed in Dec ‘21 - showed inflammation but ruled out anything more sinister ) She would like me to stop taking pred 1 week before the scan to obtain an accurate picture. - is that ok? I didn’t think it was a good idea to just stop taking pred. Thanks.

[SnazzyD]

I would be asking them how they will be protecting you from adrenal crisis.

cks.nice.org.uk/topics/cort...

I’m not an expert but 6mg and your CRP staying raised, it may be that the Pred isn’t too much of a problem for the scan perhaps.

[Theziggy in reply to SnazzyD]

Always regarded as one of the Forum Gurus SnazzyD

[Rebsy in reply to SnazzyD]

my thoughts exactly!

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD - a dangerous approach - perhaps at 6mg THEY think it will be okay - nah!

[PMRpro Ambassador]

What dose are you on is my first question. And at 6mg that is probably the worst possible dose for risk of an adrenal crisis - not low enough for ANY adrenal function to have returned and loads to function well on it. I'm also far from convinced that PET-CT will show anything much at that dose so at best it is unreliable so really rather a waste of time, money (quite a lot) and exposure to radiation.

It seems a very extreme measure for what is to us a common experience - an overshoot of the dose you need leading to the inflammation not being quite controlled. I'd say a week of more pred and repeat the bloods would make far more sense. You are barely 16 months in to the PMR journey so there is no surprise the PMR is still active - when did the CRP start rising, at what dose at the time?

[Rebsy in reply to PMRpro]

Thanks PMRpro. I’m on 6mg pred at the moment. In Jan ‘22 CRP 62 and ESR 44. Went on 20mg pred and CRP down to 5.3. Started reducing pred and CRP 25 in August ‘22. In Dec ‘22 CRP 27.8 and Feb ‘23 it was 32. Latest result is 37. I had my covid booster and flu jab in late Oct. I haven’t kept a detailed record of my pred reduction but have been reducing by 1mg every month for the last 4 months. After my initial PET scan my consultant was keen to get me in remission to reduce long term vascular damage. I’m not keen on another radiation dose when I suspect my results will probably be similar to the first. I’d like to know what they’re looking for! I’ll perhaps start by getting an appt with my gp and then speak to my consultant.

[PMRpro Ambassador in reply to Rebsy]

Well you are only in medical remission - induced by medication and that only lasts as long as you take enough. Once the CRP starting rising it was a sign the pred dose was too low and not entirely controlling the inflammation. It cures nothing - it is a management strategy and only manages when used effectively.

[Rebsy in reply to PMRpro]

ok… so do I just ignore my CRP and keep reducing ( I don’t feel that bad) or am I risking long term damage from the heightened inflammation ? Suspect my consultant will not increase my pred but put me on steroid sparers

[PMRpro Ambassador in reply to Rebsy]

The point is that the inflammation will build up - like a dripping tap eventually fills a bucket and overflows unless you keep scooping out more than is going in. The left-over inflammation not controlled by the pred will also build up and eventually you are back where you started. That will happen even if you are at only very slightly too low a dose of pred - the more you reduce, the more is left over and the quicker it builds up. That long term vascular damage she wanted to avoid is still a reality.

[PMR2011 in reply to Rebsy]

No, would not ignore CRP and keep reducing. Since it’s elevated you have inflammation somewhere. If it were me I would be glad to have a scan as it is more concrete for medics and hard to get! As others have said, very risky to suddenly stop Pred. If you can squeak it lower tho before the scan such that you have symptoms, then all the better.

I never had a scan. My GCA was generalized symptoms. Did not have an US because already on Pred for PMR. Pretty sure I have the LVV type of GCA but never confirmed, wish it had been. Tho am lucky Actemra has worked wonders for me.

[Bcol]

Can do nothing but totally with everything said so far.

[Devoid]

I was just asked to get to 10 mg and not take any the morning of the scan but to take it with me to have as soon as the scan was done. Just how someone can give you that information is beyond me

[PMRrunner]

I was on 12mg prednisolone when I had a PET-CT scan to rule out anything more sinister going on. Like Devoid I was just asked to delay taking it till after the scan.

[PMRpro Ambassador in reply to PMRrunner]

Ah yes - but ruling out the big C and identifying vasculitis are rather different.

[Jackoh]

“stop taking it a week before scan” - words fail me!! 💐

[Flivoless]

A week? One day more like.

[Broseley]

My rheumy said I might get a PET CT scan but not until I'm down to around 3mg or lower.

[Sophiestree]

My Rheumy sent me for a PET CT and I regret agreeing to it. I had a horrible time after losing TCZ and was up to 20mg at one point. Of course there was no sign of inflammation.... but I no longer have LVV apparently and so to get off the steroids ASAP.I wish I had refused but too late now, so just keep rebooking my appts as I'm doing a slow taper from 8 to 7.5 and she'll be expecting me to be below 5 by now or even off them.

The only saving grace is that my surgery have me down as being on 8mg for my parathyroid surgery and so I'm just going to stock up while I can.

My daughter is going to Greece for Easter and I'm pretty sure someone said you can just buy them in the pharmacy... I might ask her to check that out. I need to know I have that security blanket in my cupboard.

[Pr0jection in reply to Sophiestree]

You may be able to buy them in Greece. I live in southern Cyprus and I know you can't get them here without a prescription, but when we pop over to northern Cyprus for a holiday they are available without a prescription and incredibly cheap.

[Sophiestree in reply to Pr0jection]

Ah ok. Thank you. Maybe she can't then. I'll mention it to her.Funny, she was also looking at Cyprus...