Inflammation markers.

[agnes-D]

Hi all, wondered if anyone knew about this. Scottish nhs. Asked to have my CRP checked with my GP and told they don't get done now unless you are in a flare. Phoned reumy clinic and told the same, it was up to the GP. Have the goalposts moved as I have had them done fairly regularly at GP over the past 11 years. Hospital insists that,s always been the case. Very confused. Maybe some of you good people would know something about this. Ta much.

[Froggie70]

Hi Agnes. Up until a few years ago it was just a given that it was done. Then it started to be missed and I had to ask. Most of the time I get a raised eyebrow and a ‘why do you want that?’ But I always stand my ground. Do you still get a wee purple book marked up each time with the previous months results? That stopped and they are definitely not entertaining that anymore. Hope this helps🤗

[agnes-D in reply to Froggie70]

Hi Froggie, never had a wee book with results. I will speak personally to my gp(not done that yet) I wanted to see what the situation was with others. It all seems to be becoming a bit of a lottery. Thanks

[Froggie70 in reply to agnes-D]

No problem, good luck and let us know how you get in. Take care. X

[agnes-D in reply to Froggie70]

Will do. Ta much.

[charisma]

I’m in Scotland but likely not the same Health Board. My blood tests do include CRP.

[agnes-D in reply to charisma]

Thanks Charisma, mine always have done for 11 years. Mystified.

[charisma in reply to agnes-D]

Hi Agnes-D

RA has been hard to subdue in my case, and the only way to tell I’m not well is with CRP included; drug infusions have killed B cells so I rarely have symptoms, just those that don’t mean much taken on their own.

But policy may vary depending on individual disease activity status and Health Board too. 🙂

[agnes-D in reply to charisma]

Yep Charisma, my CRP is usually raised due to being unstable and gp know this. I will speak to them. Let you know how it goes.

[helixhelix]

My ESR mirrors my CRP, so for me makes no big difference which I get. For others it does.

But are you getting ESR instead as need to have one of them!

[agnes-D in reply to helixhelix]

No. None of the 2. Used to get both monthly then 3 monthly then 2 years ago only CRP since. My ESR is usually the higher of the 2. Since covid it,s been 6 monthly CRP only now nothing.!!!.

[Neonkittie17]

Hi my CRP is done each set of blood tests but not the ESR anymore. x

[Sheila_G]

Hi Agnes. I have my bloods checked every 3 months. I still have my purple book. I have just looked initbto check and noticed that my last tests, 2 weeks ago, included a crp result but the previous 2 tests didn't. I can't explain it, sorry. I remember a couple of years ago now, there was a new test in the book and when I asked what it was, the nurse just raised her eyes and laughed like it was none of my business. I felt like a reprimanded child and was angry. I didn't say anything but she more or less suggested that I didn't need to know!!!!

[vonniesims]

I am in Yorkshire. Only get CRP done if I request it, but do get ESR

[CagneysMum]

I was a given an NHS small book (white, not purple) to record bloods in when diagnosed 3 years ago. Blood tests were monthly to begin with and advised to change to 2 monthly tests about 9months ago when I started biologics.

My blood tests (CRP, ESR,ALT, WBC etc) are done at hospital but it's up to me to just turn up at the phlebotomy unit and wait/queue (no appointments necessary) with required form (I request these from rheumy team 12 at a time). Then I wait a couple of days and phone to request my results are posted to me (they won’t give info over the phone). Results are automatically sent to my rheumy team with any abnormal results highlighted - but they don’t contact me unless there’s a concern. Only ever contacted once.

This feels like my only control monitoring of the RA so I shall just continue going bi monthly until told not to.

[ATSF]

Exactly the same situation where I live (North Midlands). I was told it was because the Ruematology Hospital in the area are not reporting to the areas Doctors owing to a disagreement on who should be doing what.

[Sjhoney]

Hi, I’m in Scotland and get my CRP checked most of the time. It’s been slightly raised for several months so they’re keeping a check on it. I used to get the actual number from the receptionist when I called for results but they’ve stopped that now for some reason, very annoying! Like it’s a big secret that I’m not allowed to know 🙄

[agnes-D in reply to Sjhoney]

Yes it,s amusing isn't it. Just ask what the level is, that's what I do. I am a retired nurse so find all this frustrating and will need to discuss with GP but what one is the question. They all have differing opinions.

[Sjhoney in reply to agnes-D]

I do ask but they can’t see it anymore! I have to to make a telephone appt with a dr, it’s very tedious 🙄. I was told at the last one it’s ‘stable’ which I took to mean still a bit too high. I’m seeing my rheumatologist in a couple of weeks so I’ll get more info then.

It’s totally ridiculous tbh, shouldn’t I be the one person who gets the number? It’s as if they’re scared I might start thinking for myself 😄

[Mmrr]

I'm in Edinburgh, I'm seronegative, my bloods are always normal but my ESR is always checked too.

[Garnacha]

Although in South Wales & pretty new to RD , when I asked what my CRP levels were at the drs i was told they don't test for it, when I asked why was told that they assume everything is OK! I said how the he'll do they know then if the meds are working especially when in pain & only on some of them for a couple of months, I said I don't understand why they aren't being proactive instead of reactive, they did on this occasion include CRP which showed it was still high but I don't think my last blood tests included it again, doesn't make any sense to me

[agnes-D in reply to Garnacha]

I am going to try and find out what the health board (nice guidelines) are for all this. Hopefully there is some or I will ask nras.

[Otto11]

Hi I had this discussion lately with my GP. I’m on 3 monthly blood & have been for years & usually had CRP done each time however I noticed it wasn’t being recorded & GP said it’s £50 each time just for CRP but would tuck it on next blood test but the hospital didn’t do it even though it was requested ( which they frequently do). My GP said not to worry as they only do it now if you have symptoms of a flare. I wasn’t too sure about this so called my Rheumatology helpline who agreed with my GP. They said just once every now & then is fine. Things seem to be changing.

[agnes-D in reply to Otto11]

Yes, certainly looks that way. Thought it might be something to do with cost but still surprised there is no clear guidelines.

[oldtimer]

I was told only to have it if in a flare or before the 'annual review'. In my case it's often not very helpful - It's obvious the joints are red and swollen.

[mairtea]

I'm in Glasgow. CRP was done with my initial diagnosis in March 2020, but not since . I've had at least monthly blood tests at my GP since starting sulfasalazine in June - ESR every time. Since about October, I've emailed my GP surgery and requested results be emailed to me.

[Otto11]

Yes me too. RA nurse suggested every other time so 6 monthly. I’m sure it varies a lot depending on your Rheumatology team x

[agnes-D in reply to Otto11]

I am with Glasgow hospital too. Southern. That was the I got from the nurse re don't need to do those bloods. But thank you for response.

[bienassis]

Just read all these varied and interesting posts. The inflammatory markers - ESR and CRP - seem to be done in a random way sometimes without a proper explanation.

The ESR is the cheaper of the two, so that might be one reason, but they are often used for different complaints. The ESR measurement doesn't go down very quickly so the next measurement may not reflect the improvement, whereas the CRP responds rapidly to improvement.

I have both every 12 weeks, and I have noticed this over the years. There was only the ESR in the 1960s - that is all I had then - the CRP became available much later.

The tests done in the haematology laboratory are cheaper than those done in the chemistry laboratory (liver, kidneys for example) and I think the CRP is done in that lab.

There does seem to be a money saving campaign going on - I used to have blood tests every 8 weeks for many years, but since last year they changed to 12 weeks.

Another point: a little dispute is currently ongoing between hospital departments and GPs as to who does the blood tests. Mine for the RA are all done by the GP, but recently I have also need a test once a year for haematology but the GP refuses to do it saying he is not funded for it. Haematology were flabbergasted - said they had never met such a reaction from a GP before!

All the above will also vary according to your area and NHS Trust, I suppose.