Crp levels: Hi all i've just found out my crp... - Vasculitis UK

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Crp levels

mandyf profile image
11 Replies

Hi all i've just found out my crp.levels are 130 when they should be around 5. Is this aa bad as it sounds? My white blood count is also high but there doesn't seem to be any infection.

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mandyf profile image
mandyf
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11 Replies

Hi Mandy

Elevated CRP levels can be an indication of infection but they are generally associated with an inflammatory process. A high white blood cell count suggests the immune system is 'busy' which again may be a reflection of inflammation. I'm unaware what (if any) type of vasculitis you may have but suggest you get your specialist to look into what's going off including an ANCA test as well as investigating your general well-being.

Healthy wishes.

Martin

mandyf profile image
mandyf

Thanks martin. The current diagnosis is systemic vasculitis but it will probaly be refined to behcet's or neuro behcet's. I'm in hospital at the moment so they're looking after me but it just sounded horrifically high. I'm still new to all this and i've never had raised levels previously.

JontyW profile image
JontyW

Hi Mandy,

I was diagnosed with CSS (Churg Strauss Syndrome) at end of April 2013, and I don't know what my CRP level was then but have been tracking it ever since on all further blood tests once started on Predlisole and CellCept. The max level is 10mg/L.

- end May (i mth) = 101

- early Jun (1 week = 48

- early Jul (1 mth) = 37

So my CRP is slowly coming down and the medication starts to reduce the inflammation, and most of my symptoms are reducing, thank goodness. As stated previously CRP is mainly an inflammation measure,

"CRP tests check for inflammation in the body, flare-ups of inflammatory diseases such as rheumatoid arthritis, lupus, or vasculitis and to determine if anti-inflammatory medicine is working to treat a disease or condition.".

Get well soon ... JontyW

pinney profile image
pinney

Hi Mandy,

I was diagnosed with Churg Strauss syndrome and mostly my body presented elevated CRP, ESR and eosinophils. These were the main markers which Addenbrookes looked at which suggested disease activity along with any treatment amendments.

Hope they settle soon for you.

Best wishes

Lynne

mandyf profile image
mandyf

Thank you. I just got a fright because they had been perfect all along. I took sick on wednesday with extreme pains in all joints, muscles, lung, head and neck along with severe gi symptoms. Last night was dreadful with stomach cramps andd vomiting plus an extreme casr of the runs progressing to extremely bloody stools. They had to the doctor for me at 4 and after an injection of buscopan and one of a morphine based painkiller i don't feel as bad. I just hate when you're getting worse instead of better even though they're upping the drugs. I'm on steroid injections so hopefully they'll start to improve things

JimL profile image
JimL

I have WG/GPA and my CRP was over 100 when I was diagnosed and every time I have a flare it bounces back up again. Because of this my consultant uses my CRP count as a useful early indicator, so I have monthly blood tests to keep an eye on things.

Jim

mandyf profile image
mandyf

Mine is still climing. Yesterdays was 165 and today it's over 190. I'm just on steroid injections as they've taken me off my imuran - which i was only on for just over two weeks. I'm in the public health service now so i won't see a doctor until monday.

Jools52 profile image
Jools52 in reply to mandyf

My highest was 260 in May 2007. I've not had any period since where my cap has been in the normal range. It's odd as I had a very bad episode start of October where I was in a rigor and hallucinating. Blood coming from nose and mouth. Blue lighted into hospital and stated 8 days.

My problem now is that I need surgery, as an emergency, to mend the two herniated discs on my lower spine as they are pressing directly onto the nerves going from my buttock, groin a legs. Inam yelping each time I move from sitting. The surgeons won't operate if I start cyclophosphamide yet Dr Lachman at the Royal free says I need to start treatment ASAP. My crp, on leaving hospital was 34.

mandyf profile image
mandyf

Yipee. My crp levels are decreasing. I'm down from 192 to 69. I'm delighted!

fillyhome profile image
fillyhome in reply to mandyf

Hi Mandyf. Not heard from you in a week. How you doin and how's those crp levels. Take care x

mandyf profile image
mandyf

Hi fillyhome. Sorry for the delay in replying, I haven't been able to access the site on my mobile since the upgrade and I wasn't at home to use the broadband unfortunately. I got out of hospital on the Thursday with my CRP decreasing nicely to around 60. I got to see a Rheumy in the public health service - my first Rheumy full stop.

At first I saw the junior doctor who spent over an hour going through my history. Then the main consultant came in and said that they would have to run the tests again to see if they could come up with a diagnosis. I was a bit deflated by this as I'd just got my diagnosis (although I didn't have a type of vasculitis specified) they claimed that the biopsy was too vague to diagnose vasculitis and that Behcet's was so rare they didn't think I would have it.

They advised to stay off the Imuran which I had been on for two weeks (I had increased from 50mg to 75mg a few days before I took ill). I asked what to do if the Bell's Palsy came back - should I go back on steroids. He looked really confused and asked what I meant even though I had just spent the best part of an hour advising that I have had recurrent bell's palsy every time I'm off the steroids for more then a week. He asked what happened when I got Bell's Palsy so I showed him the photos on my phone (my private consultant had asked me to keep photos of everything). Luckily I had to scroll through lots of other photos in my Behcet's file to get to the bell's palsy ones. On seeing the various rashes, responses to pinpricks, mouth ulcers etc he changed completly and said I think this is Behcet's! Result!

He advised me to start back on 75mg of Imuran on the Saturday to give my GI tract a chance to recover from the campylobacto food poisioning.

I was due to go on a family holiday (within Ireland) on the Saturday so with my doctors permission I went ahead. Big mistake. I took my first dose of Imuran at about 10 at night and within 2 hours was violently sick again. I spent the entire night being ill and running to the loo (sorry TMI). By the next morning I was incredibly weak and sporting a temperature. As I was over 300Km from home I was reluctant to try to make it home.

Within the next few hours I got progressively worse and couldn't even sit up in bed. My mum and sister wanted to ring an ambulence but my husband wanted to take me home to the hospital my consultant was in. I was too sick and tired to argue with anyone but let my husband put me in the car with my mum in the back. The drive home was dreadful. I was hallucinating from the high temperature and dehydration and my mum was trying to sponge me down from the back seat.

As usual they couldn't get a line in for blood tests and fluids so it was the usual 2 hours of various doctors and nurses trying before we finally got sorted. Apparantly my vital signs were not good with my pulse way higher then my blood pressure (I had no idea what this means but I'm told that it meant I was septic). I had the rash all over my face as usual and on my arm as well which was a first. At first they were worried about meningitis with the rash and the temp of over 40 degrees.

The CRP came back still at around 65 so it wasn't much worse but my white blood count, platelets and a load of other things were high too. Most of my blood results were flagged as either too high or too low.

I was moved up to a ward and given difene and paracetemol drips along with fluids and something for the vomiting which was a god send! Unfortunately then my veins collapsed and they couldn't get another one in. They could get bloods using a butterfly clip though so it wasn't so bad and I could drink by this stage.

Once the nausea stopped I realised that my joints had completly seized up. My ankles and knees were very inflexible and my lower back was the same. I couldn't even get out of bed without something to drag myself out by (it was like being heavily pregnant again). I thought that as I was at the hosptial that my consultant was based from (Navan hospital in the Rep of Ireland) that I would see him once the weekend was over but I was wrong. Although he has clinics at Navan he doesn't see patients in the hospital. I can't figure out where he does see inpatients as he doesn't see them in the next hospital over either.

It was a complete waste of time driving home as they didn't do anything regarding my condition. Once the vomiting stopped they discharged me with my CRP still at 65 and with me unable to walk properly from the pain in my joints. The consultant was due to review my chart that day in the outpatients department of Navan hospital but they wouldn't phone him and ask him to see me - even as an outpatient.

They advised me to stay off my Imuran as I suspect that I can't tolerate the higher dose - it seems suspect that I ended up in hospital twice soon after increasing to 75mg with the same symptoms.

When I was in hospital the results from my opthalmic surgeon came through advising that there is significant damage to the optic nerves in both eyes - I'm due to have a field vision test in a fortnight to detemine if my sight is affected and if so how much it's affected. It never rains but it pours!

I'm due to see the rhuemy tomorrow so I've got my fingers crossed that we'll start some sort of treatment again.

On the plus side I lost 11lb in a week and can now fit into the dress my dress for a friends wedding this Saturday and my Bell's Palsy hasn't come back yet even though I've been off steroids for over a week. Fingers crossed it stays away till after the wedding!

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