CRP getting higher.

[Chopin002]

CRP is getting higher, although I am feeling quite good. I don’t understand why the test is saying I have so much inflammation. No cough, cold, or sign of infection. What I do have is burning pins and needles in various areas, usually legs, but mild . Have always had this and now I have mild ear pain almost feeling plugged, but dr. Looked in and sees nothing. I am using DSNS for prednisone and transitioning from five to four and a half. The PMR jello legs and stiffness, not able to get up from a chair, etc. all better. Rheumy says I better stay at five for a while as could be on the verge of a flare. Any suggestions? Should I go higher for just a few days, and any info on the plugged ear? Thank you all.

[PMRpro Ambassador]

If the CRP is rising it is possibly showing that either the pred dose you are now on is too low or that the activity of the underlying autoimmune disorder is ramping up. Ears CAN be a part of GCA - and that is something you do need to bear in mind when you have a diagnosis of PMR, at any stage. If it were me I'd add a few mg for a few days and if it improves go back to the old dose and wait a while and see what transpires.

[Chopin002 in reply to PMRpro]

Thanks, just popped an extra two mg. Hope that does the trick.

[Choco-Holic]

Hi, I’m very similar in that my CRP is rising, last test this week it went from 13-16 (over a month). Don’t understand as I feel so well and have no return of symptoms (yet!). I’m down to 3mg and have sat at this dose for 9 weeks now. It’s a strange disease for sure! What is your CRP at the moment?

[jinasc in reply to Choco-Holic]

Normal CRP levels

CRP is usually measured in milligrams of CRP per liter of blood (mg/L). Normal CRP levels are below 3.0 mg/L.

This is the important bit

"Keep in mind the normal reference range often varies between labs."

Which means you cannot compare person to person unless that person's test is in the same lab.

Same goes for ESR.

[Chopin002 in reply to Choco-Holic]

Hi, when I started 46 was my CRP number. 20 mg. Pred put me to a 2. I was ecstatic. Then after tapering I seemed to sit at about a 6. Three months ago up to a 9 and now up to a 16 and feeling quite well. Find this scary, so I am upping my pred for a few days and hopefully that will put a blanket on the inflammation. Thanks for your replay. Interesting to find someone the same.

[Chopin002 in reply to Choco-Holic]

This is indeed a strange disease. Our inflammation is high , but we feel quite well.

Some one else feels terrible and the number could be low for inflammation.

Very frustrating.n

[Hidden in reply to Chopin002]

Or completely in the "normal" range for 20% of people.

Very frustrating, especially if your rhrumy/Dr only likes to go with the numbers. If your markers lag behind or go wild due to stress that adds another layer of confusion.

I take numbers as an also ran....I go by how the PMR symptoms feel. I used to get pain in my thighs as a warning, now it's my arms. So not even the physical markers stay the same for me never mind the bloods. Very complex for each person. Deciding when you are flaring and distinguishing between overdoing things for a few days is the key. The flare requires pred, the over doing it or delayed onset muscle soreness (DOMS), requires rest and recuperation.

Frustrating indeed!🌻

[SheffieldJane in reply to Hidden]

It sounds like you understand these numbers P. My doctor phoned yesterday to say that my ESR was 29 and my CRP was 33, so something is going on.

I have also got to have a virtual Colonoscopy next week because of a change in bowel habits that I have had for weeks and put down to drug side effects. There is nothing virtual about how unpleasant it sounds but apparently they are not doing real ones. It may explain the inflammation but the headache pounds on. He is talking to Rheumatologist tomorrow. Beam me up scotty!

[Hidden in reply to SheffieldJane]

Hi sj, there are probably up out of normal range. Sometimes it hard to know how much higher than your normal they are. Your symptoms seem to be around a lot and that's what would make me think more.

Without being indelicate...a new approach for me (☺️)....yes new bowel habits always need checking no matter which way they run. I can say that if its stopping going that can make you feel yuk and going more is just as bad and can dehydrate and cause headaches. In fact constipation can cause headaches and general feeling of unwellness.

Having had 2 colonoscopy and more doctors digits up me bum than I care to mention in 12 months, until the week before covid started getting press...a "virtual" one sounds reasonably ok. Good luck.

[SheffieldJane in reply to Hidden]

Thanks. It’s going more, loose, and pain. They still do that inflating thing though and a CT scan, from various angles. I dread it. Bet you never experienced the digit thing from a spaceman. There, that’s indelicate for you. Thanks again though.

[MarkWin]

Sorry fo delay in responding. CRP and ESR are very good indicators of when something is happening (inflammation, not enough pred as controlling agent, etc). My real issue is that before the GCA happened, I knew nothing of any of this, never been tested at 'normal', so had no baseline. When I eventually went to GP, I was seriously unwell, and CRP was 180 when 'apparently' it should be <7, and it then doubled in following week when I was in ACU. My wife did the research so we knew what we were being told (I wasn't with it for about 3 weeks and was in hospital for over 5 before released on 60mg/day pred). Pred was amazing, but didn't understand balance of GCA vs pred as agent for a while. Got the hang of it - because of advice on this forum, thank you everyone - and I now know when I am tipping out of kilter without results of blood tests as I can 'feel' it. My flares have been too swift on reduction and on each occasion I knew they were bad, and bloods showed CRP 40, though ESR high 20s only. Your body will tell you what you need to know, as long as you know roughly how you should feel when you are in balance. Issue of normal is only what is normal to you, and mine appears to be CRP between 7-12. ESR seems more variable but never above 14. A quick read, available on amazon or similar, is Mason A Clark's "GCA One Man's Exciting Experience". These are indicators, very helpful if you know your own normal, and should not be the full story of what is right or wrong.

Sorry you are out of balance and hope you find equilibrium soon.

After three and half years, I am leading a quiet but normal life, though now unemployed!! Best of luck.

[Chopin002]

A light at the end of the tunnel. Thank you so much.