Inflammation, but without elevated CRP/ESR

Firemanphil_39

Hi all...
Would anyone be able to offer wisdom from their experience? I saw my Consultant about 4 weeks ago, I mentioned biologics and we honed my diagnosis down to PsA. I'm seeing the biologics nurse this Thursday .

I have slight swelling to my knee, more inflammation and persistent swelling to ankle and foot/toes I do feel that 20 mgs of meth weekly and 2g of sulph daily isn't cutting the visible inflammation and my tender joints.

So, my concern is my most recent bloods came back with CRP and ESR values of 1 and 2 ( they have been decreasing recently but the swelling remains, the highest figures were about 25 ish)

will the biological nurse disregard me for biologics based on bloods alone being within normal ranges?

dreamdaisy

Those figures are very low, mine have only been at that sort of level thanks to the humira but the pain has remained thanks to the joint damage. Thinking about it, even when I was on infliximab and enbrel they rarely dipped below the upper 60s and were in the 160s-170s at their worst. Have you ever had a joint aspirated? That might be enough to sort it out. I don't know what your hospital's criteria may be for beginning an anti TNF but I reckon you wouldn't qualify for one at mine. Please let us know what the nurse says, this is an interesting one! I wish you well. DD

Firemanphil_39

Cheers for the reply. I've had my knee aspirated, I was told that ankle joints don't really give up their fluid. I'll keep you posted. I was wondering if it's possible to have 'active disease' but without the elevated blood markers.

dreamdaisy

That's true, ankles are reluctant to part with their gunk, my right one was stabbed last week then steroided, no gunk emerged despite some determined needle-wobbling and the steroid has already worn off. I think the sero-negative versions of this dross can be active without registering on blood tests but I don't know how that would impact on an application for a biologic. It's a tricky one indeed, I hope someone else may be able to help. DD

Firemanphil_39

Cheers, I thought I'd read that fact somewhere! Fingers crossed Cannock hospital got the right post code!

janie68

I go to Cannock hospital too! How funny!

I dont know about having biologics with low blood markers, but it would affect your Das scoring where the ESR is used as part of calculating your Das score. So it may affect you being eligible for biologics.

My experience has been mixed with them, I am now failing on my 3rd anti tnf, ESR rising again, Das score hitting 6, which is just pants. But they can be very successful for some, and I have had 6 good months on Cimzia, although now failing.

The person to talk to re biologics is Sam Roskell at Cannock, she is excellent, perhaps get an appt to see her?

Good luck

Janie

tillytop

Hi Fireman Phil

in my experience blood tests do not always reflect what is actually going on. I have RA and even when I have had times when I have been literally seized, top to toe, my ESR/CRP have probably been not more than 20s/30s, maybe 40s. If I remember rightly, highest CRP ever was 60 ish and ironically, I wasn't actually doing too badly at that point.

As to whether you will qualify for biologics - I would not expect them to base their decision purely on the blood resuts. Usually, I think, they would rate your DAS (disease activity score) which, as you may know, is a complicated calculation based on blood results, number of tender and/or swollen joints and your own "score" saying how you are feeling. If you look at the National Rheumatoid Arthritis Society (NRAS) website, they have a good explanation of DAS and what the resulting score means. When I first started biologics, it was when they very first became available on the NHS and people really did have to "jump through hoops" so to speak to get them. As well as DAS figures, I had to be assessed by two independant consultants who had to verify that my RA was active and that I had tried and failed on other DMARDS. But now that these drugs are much more "mainstream" I think it is generally a quicker process than it used to be.

Good luck and please do let us know how you get on.

Tilly xxx

Rosycheeks

I have exactly the same thing regards to CRP/ESR. Visabily swollen joints but a normal CRP. However my Rheumy now tests my Plasma Viscosity as well as CRP and that is almost always raised, along with my white cell count.
I hope you got the biologics

Firemanphil_39

Cheers for that Rosy.... That makes me feel a bit more positive... I was worried that I would be dismissed. Those tests are what I have been overlooking... I've just been monitoring the ESR and CRP for 'an improvement'. I currently looking at CASPAR. It seems the elegibility criteria is 3 swollen joints and 3 tender joints....

Fingers crossed

Rosycheeks

Have you ever had your Plasma Viscosity done? And if you look at your white cell count and neutrophils they could be raised too. Mine very often are and I was told by the rheumy and my GP that they are all signs of inflammation. I was also told that the CRP/ESR can be normal in some people with inflammatory arthritis and that they are only 'part' of the bigger picture.
Take care. x

Firemanphil_39

Well, i'm looking at my record book. My white cell count is currently 7.6 ( highest 10.3 and lowest 6.6) and my neutrophils are 5.2 (highest 7.5 and lowest 4.3)

These values mean nowt to me! Anyone want go give me some of eir figures to compare?

Physically I can pedal a bike... Walk the dog round the block ( but 4 mile walk on a track leaves me in bits... I'm sure erre is an element of enthestitis going on in my foot/ankle...

Last night I/we got a grass fire... That involved me walking in my boots/firekit off road for 1/2 mile, then negotiating around uneven surfaces with a hose reel watering the burnt areas for a couple of hours.... Very sore and limpy!
Cheers

Rosycheeks

Ok I was given a sheet with all the blood values on from the rheumy nurse. Its worth bearing in mind that some labs have slightly different 'normal values' for certain things. Here goes :
White cell count should be between 4-11
Neutrophils between 2.5-7.5
Platelets between 150-400
ALT between 10-40
Alk phos between 75-160
CRP below 8
ESR for a male below 12 and below 15 for a female
Plasma Viscosity 1.5-1.72

Hope that sheds some light for you
x

Firemanphil_39

Many thanks for that info. Looking like all my tests fall between the normal parameters. ( there nothing down for plasma viscosity though)Will have to wait and see what the Biologics nurse does...

dreamdaisy

I was pondering all of this last night. I reckon the meth etc is controlling matters, hence the low inflammation markers, so my thinking is that the swelling that is left is possibly old stuff: I ended up after five years of swelling with a left knee 27" round, composed of new and old (solidified) fluid. Two ops to strip it all out didn't solve the inflammation problem (but at the time no-one recognised the fact that I had an inflammatory arthritis, including a rheumatologist).

If you are still able to pedal a bike etc then, believe it or not, that is not too bad. If the four mile track thingy leaves you in bits then only do three miles (or whatever). One of the hardest things to adjust to with this arthritis malarkey is the acceptance that one is not as one was before, and one will never be that person again, even if the biologics 'work' (try not to get your hopes up about those, either). What makes it worse for you, I think, is the fact that you have a history of very good health. Over the years I have found that my expectations of me and what I can physically hack have had to be constantly, and consistently, lowered. 'Tis the nature of the beast - and it is far from an easy thing to do and accept. DD

dreamdaisy

Just popping in to wish you well for tomorrow - please let us know what they offer - I am curious! DD

amboritic

I am exactly the same, my pain is not related to the CRP/SED values.

I get no less pain when they are below five and actually no more pain when they were well over 60.

I had visble swelling to my wrists and ankles even with my markers at almost normal levels.

But then again I also had very few if any joint pains until I was put on Sulpha, I feel a lot better in the last six months now that i on on Meth.


I think these are the things that make our situation a difficult one, pain and other symptoms can be so variable.

Firemanphil_39

CheersDD,
will keep you posted

Firemanphil_39

Well, seen biologics nurse this morning... There is no need for a second assesment... I'm elegible for biologics.... Got a good explaination regarding my bloods being 'normal'...
I'll write more later....
I've got questions regarding biologics now...
x

dreamdaisy

Wow, the thinking has changed. I had to waste four years in proving that meth and sulph weren't helping before I was considered. I hope they help you better than they have ever done me. Good luck - I wonder what they will try first? DD

Firemanphil_39

I came away with a choice... Golimumab, enteracept and adalimumab... i can ponder over the next 4 weeks when i go back.... Decisions decisions...

Firemanphil_39

The biologics nurse explained that blood is simply the transport system. So the rougue cells that are attacking ourselves have already reached their destination ( our affected joints) and left the blood stream. Hence the absence of 'blood markers' .

It was Sam that did the assessment. She was lovely. I may be tempted to go with the golimumab ( just the the fact it's the most recent )
X