What sort of auto-immune disease?

I was at the hospital last week and a new registrar was sitting in on the consultation.

He asked what sort of auto-immune disease I had. We all looked blank and said Behcets and then the penny dropped and the other doctor said I had a neutrophilic auto-immune disease.

Apparently my white cells (neutrophils) are very raised from time to time.

I didn't realise there were different kinds of auto-immune diseases.

Do all BD sufferers have raised white cells (neutrophils)? Any comments?

Lesley

25 Replies

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  • From the word bases, Les, this suggests to me that all he's saying is you have an autoimmune disease that attacks your neutrophils, which is, as you say, another name for white blood cells -WBC.

    Raised white blood cells is referred to as leucocytis, of which there are several different types, with neutrophilia (raised neutrophils) being the most common. Neutrophilia indicates that your body is exhibiting an inflammatory response - usually due to bacterial infection.

    Prednisilone and other corticosteroids can also cause neutrophilia.

    The really scary cause of WBC, which I'm sure doesn't apply to you because your elevation is intermittent and not constant, is leukaemia.

    Knowing this stuff would make me question whether the auto-immune disease is causing the raised WBC or if it is, in fact, a result of the disease. Does that make sense?

    This is from my knowledge but it's interesting so later on I might do a bit of research on it ;-)

  • I can't find an edit button - what makes me think he's talking about the BD attacking your WBC is the phrase 'neutrophilic auto-immune disease.' Philic means hating so that to me is 'white blood cell hating auto immune disease.'

    x

  • Stupid woman! Of course, philic means love and phobic means hate - so it's a neutrophil LOVING autoimmune disease, which makes much more sense.

    Still gonna do some work on it though

  • Hi Di

    What one of the doctor's said to a group of medical students (and me with my ears flapping) - "Lesley is unfortunate enough to have a neutrophilic disease which is eating flesh and veins" (Try digesting that).

    Cheers (although I don't particularly feel that way today)

    Lesley

  • I know that when I first had my bloods tested and any time after, I have 'elevated' WBC...

    At my worst I was rushed to hospital and spent three days sleeping with numerous drugs being pumped in to me (this was pre diagnosed BD) and the doctors couldnt work out what was wrong with me..

    My blood count was 400...which is why like dev said.. leukemia was mentioned... I was so very ill... and dont really remember much about it, apart from what my mum told me after.. she said that literally dozens of doctors and students were in and out my (private) room..As she works in health care, she understood wee bits of conversations, but she said they were baffled at what I had and how to treat it..

    I remember looking up at the drip and it had two glass bottles and two plastic bags,, all going into my wee body!!!

    I do however know now that it was stress that brought that flare on...I was doing wedding flowers and got myself in a tizzy...

    Dont quote me on this but Im almost sure that all BD sufferers have elevated WBC's...Im sure its one of the ways that the specialist can identify BD...

    hope my wee story helps xx

  • Hi Dawnie - you poor thing - and your Mum too (mothers always worry). I'm pretty sure stress brings mine on - I have been working a bit too hard lately.

    Lesley

  • Yes, Dawnie, usually elevated WBC, ESR and CRP.

    Docs have been commenting on my raised ESR for years (its the rate the clumps of red blood cells fall to the bottom of a tube). None of them ever did anything, just said things like - hmm your esr is very raised, wonder why that is but, because not their speciality and I'd gone along for something else, it was just left.

    When I was diagnosed with irritable bowel syndrome (yes, I've been there too!), the consultant said that really there was nothing they could do, just lifestyle changes. Then he said, 'you do have a raised ESR though, suspect that's something to do with the arthritis you've mentioned in your fingers.' That was probably ten years before my diagnosis and the signs were not only right in front of them - they had noticed them too! Tis so frustrating.

    Ah well, if I didn't have the dreaded BD I wouldn't have met you lot would I? See, there's compensation in everything xxx

  • Hi all

    The WBC, ESR and CRP has been fluctuating since I got ill over 20 years ago and for the last 7 years the ESR and CRP has consistantly been high......even with prednisolone and Immune Suppressants, it just disn't want to go down.

    However, my last blood test a couple of weeks ago showed these to be within the normal range, which is the first time for over 7 years.

    My neurologist thinks I might have turned a corner and that the methotrexate is now doing the trick.

    Here's fingers crossed that the inflammation stays down and I start to improve.

    Andrea

  • Hi Andrea

    I got my card from Behcet's Society to put in the wallet - says the CRP ESR etc doesn't co-relate with a flare - must look into it.

    Cheers

    Lesley

  • Well Lesley...I know what you mean because I didn't have any positive blood tests for many many years. Which made it difficult to get anyone to take my symptoms seriously in the beginning. This left me open to abuse by the medical system as they tended to err towards saying "it's all in your head" or similar conitations on the same theme.

    My understanding is that the CRP and ESR does not corelate to the level of symptoms. I.e you can have a low rate [or normal rate] ESR/CRP and have very bad symptoms or a high ESR/CRP and not have bad symptoms.

    This is pretty much the same for other Autoimmune conditions such as Lupus.

    I started to have consistant above normal ESR/CRP's 7 years ago when the neuroligical symptoms started. It was the ESR/CRP rates that convinced my Neurologist that I had a genuine problem of an Neuro-inflammatory disorder.

    He initially gave it the name of neurobehcets because of the previous diagnosis of systemic behcets. Since then I have noticed that he puts Neuro-inflammatory Disease rather than neuro-behcets....strangley enough MS is classified as a neuro-inflammatory disease and so it just goes to show how close together these conditions can be.

    You might have noticed in other postings that my ESR/CRP is at normal for the first time in 7 years !!!!

    My neurologist says it is because the methotrexate is working and lowering the inflammation. He says it may take sometime to notice any improvements in symptoms.

    That's promising news though...isn't it

    Andrea

  • Hi Andrea

    I've also replied below - very interesting what you have to say. I'm going to start a new thread re these variations.

    Lesley

  • Hi Lesley :)

    How ate you?

    Yes I have raidsed white blood cells too. Aparently this is an indicator or Auto-Immune.

    Moys x

  • Hi Moya

    I'm not too well at the moment - having a really major flare. Asked about endep for sleeping today - he wasn't too keen but he has given me other things to try.

    Nothing like a good nights sleep to face the next day!

    Lesley

  • Aw sorry to hear that Lesley... Hope you feel better soon... Must be the weather I was almost hospitalised 2 weeks ago haha!!

  • Hi Moya - you poor thing - I always take my bag packed in case I'm admitted but so far it has only been once. I think they like to keep us out of hospital just in case we pick up something else. Are you still able to work? The doctors want me to keep working - I think it is to keep our minds off the problem.

    Lesley

  • Yes I'm still going to work thank god I don't need the stress off not earning ontop of this :) my boss has been really good and said I can cut my hours if I need to but I'm doing ok, the course of steroids boosted me back up :)

    Not good about your flare! How longs it been going on?

  • yes so do i.

    i think its all part of the same thing. nightmare!

    hope ur ok im havn a bad couple of days atm x

  • Must be the weather - we all seem to be having a flare.

  • Hello all,

    I must be a strange patient with BD because,in the past, I was told I had leukopenia, which is the opposite to raised white blood cells. I always knew I was awkward!!!!

  • Hi Sue

    I'm always told I was 'special' - you are even 'specialer'

    Lesley

  • Hi everyone

    Have been 'off the air' for the past couple of days. Went up to Sydney for my appointments (was so exhausted didn't make it to Sydney Harbour). First appointment was this morning at 840am with Neurologist. Looks like I might have CNS involvement afterall (I'm upset but not shocked as I had already worked that out myself). There are mutterings of putting me on cyclophosphamide if the MTX doesn't kick in within the next six weeks. He gave me a script for gabapentin for the pain in my legs - apparently endone doesn't work too well with nerve pain. At 1140 saw dermatologists and got home about 4pm.

    Will answer a couple more threads and go to bed.

    Lesley

  • Hi Lesley...I have answered your other posting above.

    But I read this and had to reply. I am rather relieved for you that they are at least thinking along these lines. I know it is upsetting but at least they are getting to the bottom of it.

    It took me a long time and a lot of upset and hassel to get someone to listen. By the time they did I was extremely ill indeed.

    I am glad it looks as if it won't be this way for you as they are already on the case.

    I tried gabapentin but it affected my muscle and breathing weakness so at the moment am having to go cold turkey from pain killers....not funny at all :(

    Good news for me [as I said above] my inflammation has gone down to normal for the first time in 7 years, which my neurologist has put down to the Methotrexate. It took over 6 months on the methotrexate for this to happen, but it is very promising and maybe gives you a little hope that it will do the same for you.

    Have a good rest

    Andrea

  • Thanks Andrea - I actually have two specialists - one is for MTX and the other is for Cyclophosphamide - at the moment I hope MTX wins out. The problem is I'm probably having one of the worst flares out. Cold turkey doesn't sound good - I don't 'do' pain very well.

    Cheers

    Lesley

  • Hi Lesley,

    I have had cyclo for many months and i feel the best on this but I end up with life threatening infections on this and theyvalways have to take out all ports and pick lines and then put in new central lines ( not pleasant) it also makes your hairnfall out and I have now been without hair for 2 years- very cold in winter. Good luck with your drug regime. Broomstick

  • my neutrophills have been raised every week since june xx

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