ESR/CRP Levels?

wibberley

Just wondering how often you get your levels checked.

On my Sulpha monitoring sheet, I have columns for ESR and CRP but they're never filled in. I questioned the nurse about this when I had my last bloods done and she just said they weren't required. Maybe not but I'd like to know for myself!

Lois x

dorcas

Hi Lois

I have PA and have my CRP and ESR checked monthly, as well as other blood chemistry...

Think maybe the blood tests the docs need depend on what meds you're on ? ...although ESR & CRP seem pretty standard as they're the inflammatory markers .

I'm on Mtx and now Infliximab....

will be interesting to see what blood tests other peeps have.

Iris x

wibberley

Hi Dorcas,

I agree - I know it's more important to check blood counts, platelets etc, but surely they should be keeping an eye on inflammation levels too. I've only once been told what they were and that was 8 months ago when I changed rheummies.

It will be interesting to hear from others, and once armed with that info. I can challenge my GP!

Thanks for your reply,

Lois x

tillytop

Hi Lois

The ESR and CRP are really important tests because it is these which show inflammation levels - and therefore how well (or not!) the meds are working for you.

Like Iris, I too have blood tests done every month - CRP/ESR/full blood count, kidney and liver function tests. What I do is phone the GP a week or so afterwards, and arrange to collect a copy of the results. That way I always have the latest one when I go to a hospital appointment, and I, mysefl, can keep an eye on them. The print outs I get also indicate the normal ranges for each test, so I can see if anything is not as it should be (I'm a bit of a control freak I think!).

Love Tilly x

wibberley

Thanks Tilly,

Sounds like yours, and Iris' surgeries are much more on the ball than mine.

The nurse couldn't even find any results on the computer system! Monday's not a bank holiday for us, and guess who I'll be on the phone to first thing!

Really interesting to hear how other surgeries monitor things.

Thanks,

Lois x

dorcas

Hi Lois and Tilly

Tilly... you do exactly what I do! I go and collect the printouts and then complete my Mtx monitoring card with the info. If there are any significant changes I phone rheummy ward for advice.

I also have to phone the results to the rheummy Mtx sister every 2 mths so that she can authorise hospital pharmacy releasing the Mtx injections.(given 8 metoject syringes at a time)

You soon get to know what the 'normal ranges' are.....x

Lois, I hope you get your results Monday!

Iris x

jenniet

Hi there.

Sulpha was the first drug I was put on and then they added mtx. I have exactly the same blood tests now as I had when I was just on sulpha. In fact the booklet I have to fill in now doesn't have as many entries to fill in as my first one, although I still have the tests. I phone the surgery about a week after I have my monthly test and they tell me the results I need to fill in the mtx booklet. I have always had crp and plasma viscosity ( similar to esr I think!) done and in the beginning they gave me a really good idea as to how the drugs were working, at the moment the results seem to be consistently low, which is great!

You don't have to be a control freak to want to know what is happening to your body!

Take care.
Jenny.

wibberley

Thanks Jenny,

No harm in being a control freak - there are worse traits!

Lois x

nanarose

Hi.

I presently get fortnightly blood tests done as I'm on mtx and I get the results over the phone from my GP, a few days later.
Then the nurse at my local practice fills in my card when I go for my next test. I don't have to even do that.

I get the full gamut of tests including ESP and CRP, and she makes a point of explaining them to me.

When I visit the Rheumy nurse, she has my test results all ready on the computer, and goes over all the results with me.

I'm very happy with this arrangement and feel that everything is being monitored carefully and with my informed knowledge.

I'm sorry you seem to be getting less care than you deserve, and it might be worth mentioning to your GP that you feel you ought to be getting more input into your condition. After all it's your body and you deserve the right to know what your tests are saying.

Good luck.

wibberley

Must admit, Nanarose, I am feeling a bit neglected by mine. Time to put them right, me thinks!

Thanks,

Lois x

snowball

Hi Lois, I have r/a and my crp/ esr have always been high but since I've been on Tocilizumab they have come right down. Mine are checked every 4 weeks.

Jules x

janie68

Hello Lois

I have had my bloods done every month since being on suplha, 15 years and still on it. ESR/CRP always checked and written in my booklet by the nurse on the following visit. I reckon it will carry on for the rest of my life. Iit is good for seeing if any new drugs I am put on are working. Enbrel never worked and I knew that from my bloods. Now on rituximab, too early to tell though

Janie x