Hi all i'm new here . My doc thinks i may have css diag lste onset asthma and copd 8 months ago last few weeks i'm really fatigued my body has pain all through feel fluish itchy skin little sores and 3 on my thigh look like flea bites in a semi circle major hot sweats(not menopause) are did anyone have these prior 2 diagnosis ?
Thanks in anticipation x
Hi kujude,
your symptoms are same ones I had at the start of my css (2007); I think you would normally also get sinusitis or rhinitis - I had a constant really blocked nose and ear tubes. I would get round to your docs or the hospital and get a blood test URGENT ASAP FIRST THING IN THE MORNING - they can do an eosinophil count, the result should be up to about 0.4 I think if you're OK, , when my CSS was kicking off mine went up to 70 or similar crazy number. You need to get it sorted VERY VERY soon eg tomorrow, if left to get on with things the CSS can potentially harm you. If it IS CSS then they can get a treatment into you which will really quickly damp down those symptoms. With me, first of all I went to the local out-of-hours SERCO doctor, he took one look and said it was man flu even though I was bleeding out of the corner of my eyes and feeling seriously ill, gave me some antibiotics (yes even thought it was 'man flu'), I lasted one day then off to hospital on the monday at GP's request. The hospital docs thought initially I had Legionnaires disease cos of the high temp, heart rate, breathing probs, burning pains in arms etc. (by the time I got to the PIU I could barely stand) - they gave me a shot of penicillin in the arm and I straight away came out in bumps - allergic reaction - so then they gave me 1000 mg of methylpred and all the arm pain went away and I soon felt a good bit better, although the heart didn't slow down (by then it was being affected by pericarditis and heart valve damage, which we found out much later when they got to checking it out) - I went home after a couple of days and got on with life... till the short course of preds ran out... and it all flared up again. I was soon bleeding from the bowel - scary -despite 80 mg of preds per day so they started a course of Clyclophosphamide treatment which calms things down effectively. Then on to maintenance treatment, which will depend on the individual. PS they did a special test where they took a tiny sample from my sinuses which showed the evil blood cells (eosinophils) had got into the wrong place. What they do is clog up your tiny blood vessels. Which is why if someone just thinks it MIGHT be CSS - then you need action right away. I hope it isn't. Good luck and best wishes. Mine was left for a little too long so now I've got foot pain, yet at the same time numb feet, weak muscles, nerve damage mononeuritis multiplex with motor and sensory nerve de-fibering, heart valve damage, ectopic heart beats, eye damage, COPD... Maybe print this and show your doc? CSS is a baddy.
Rob.
PS, I was a teacher too - my CSS triggered by working too close to a laser printer (IT teacher) and in a school full of mould. Allergy double whammy - CSS thought by some to have an allergic basis. I hung on too long asking for ventilation and a clean-up and not getting anywhere... wish I'd left when I realised the school was making me ill. Got the boot soon after anyway, before my sick leave period was up, as I 'wasn't able to state a precise date for my return'- head decided to sack me - at my appeal against sacking she said 'look at him with his walking sticks - how could he possibly cope with a class of lively year 9's?' nice disability friendly head! Union not much help either.
Rob.
Hi Rob
thanks for the reply i have had two eosinophill blood tests both raised second one more so been diagnosed eosinophillic asthma i dont have blocked nose but did as a child and had my adenoids removed but i have post nasal drip (yuk) i was steriod dependant last year tapered down for three months two incidents of bowel bleeding and had a colonoscopy urgently as sister has bowel cancer i had ct scan yesterday at docs app last week high heart rate 140 and bp high havin 24 hour bp monitor i can still walk but painful acth test cortisol levels ok my cons sending me to clinic for difficult asthma but i think i wil go to docs again because i didnt have all these symptoms on last app thanks for all your advice.
I was finished on med incapacity appeal should have been wed they postponed it 8 mo.nths on sick! 23 years means nothing i am appealing for retiement on ill health as they
Finished me on incapacity without gathering any medical evidence from my gp or condultant
kujude.
Hi kujude, your story sounds awfully like mine, both in the symptoms and in the treatment by your school - in my case 18 years meant nothing either - I was good enough to be on teacher's TV but the school lied at the grievance appeals and the tribunal, said I was rubbish (obviously I wasn't great at teaching while I was off sick...) I took them to court over the working conditions but lost that one as well. In the end I got 'partial ill health retirement', the union (nasuwt) advised me that if I was still able to physically move, that was the thing to go for as that was all I'd be successful at winning. If I'd been old enough at the time I'd have been better advised to have taken early actuarily reduced retirement, (need to be 55 to do this) because at least that way you can restart teaching somewhere if you feel up to it; partial ill health means you're not allowed to teach although you are expected to work somewhere but not allowed to work with learners under the age of 18. Crazy system. If you think you'll not be able to work at all, apply for full ill health retirement as you'll get your years service made up to what it would be if you'd been able to carry on till normal retirement age. I don't know how old you are so can't say what benefit you'd get. I prefer to do a bit of work, kidding myself I'll be well again some day; so I do a couple of hours IT tutoring on a weds and Thurs - this exhausts me but it 'keeps my hand in'.
Re yr symptoms - CSS vasculitis affects the bowel, hence the bleeding. Some people have had to have bits removed as it dies off from lack of blood supply.
I would say from my own knowledge that you have enough of the 5 signs of CSS even without the sinus thing. I even had the 'flea bites' signs on my lower leg and arms (they're called Purpurea). If I was sitting in your seat I'd be chucking some preds down my throat this morning as an interim measure THEN go to the docs; if I get a bad flare up I need 1/2 a mg per kg of bodyweight - I weight 12 stone so about 35 or 40 mg, in my case, per day, that's 7 little red pills, take that for 3 days and it starts to damp down things, then reduce in my case to 25 a day; but if you take a lot over the longer term you'll need a stomach protector (proton pump inhibitor) such as Ranitidine or Omeprazole or you'll get painful stomach ulcers, and something to help your bones against the oxidative effect of the steroids, which thins them. NB at hospital they'd probably stick a drip of the stuff in and that'll damp it down. Anyway I beg you to see your GP to get a referral to a rheumatologist who is familiar with vasculitides like CSS, I would think the rheumo person would be your best bet. if your usual GP isn't up to this ask to see someone else and spill your heart out to them. Don't feel that you owe your GP 'loyalty', maybe that's partially true but your no. 1 priority at the moment is getting whatever it is, under control. I too have bad asthma, but I think it's a bit more than asthma that you have as by itself that doesn't give you red spots, painful bits, heart rate, raised BP...
PS are you in a union, they can help with the app for ill-health retirement? if not, don't worry, it's reasonably straight forward anyway; just that the union bods deal with it every day and have a contact at the TPA. You'll need to give the union or TPA a personal statement of how it affects you (don't underplay anything!), and a letter from your GP and consultant that covers the med issues too. severe eosinophilic asthma might be enough for ill-health retirement on its own... I don't know though; get the illness sorted first eh? Then have a look at the TPA website, you sign in with your teacher number so have those details handy, if you've not done so already.
Hugs and best wishes 
Rob.
Hi kujude I have late onset asthma and for 4 weeks after having flu had progressively increasing pain in arms and legs. Called 999 when excruciating pain unbearable plus heavy chest. Was diagnosed with CSS by consultant rheumatologist and immediately given cyclophosphamide and 60mg Pred. 2 days in hospital the CSS induced a stroke. It is not good enough for your GP to suggest it could be CSS and not refer you. It can have serious health issues or even be fatal if not treated in time so I would not hesitate to go to A&E. If not seen by yourself or GP already the Vasculitis Route Map is an essential read. I was interested to read what tintinrob said about the laser printer as I worked in close proximity to a photocopier in constant use during which time I was diagnosed with late onset asthma. Though I've never seen it mentioned, I wonder if this has been researched as a possible trigger for vasculitis.
Hi kujude - please listen to Dereks advice!
Hi to Derek, I'm sorry you've suffered badly as a consequence of the CSS - hope you're remaining well now! There is a good deal of research showing how laser printer and photocopiers emit copious nanoparticles which are able to penetrate deep into the airways and through the various clearance mechanisms the airways have, into the bloodstream where the body ramps up production of eosinophils in a futile attempt to destroy the 'invaders' - nanoparticles in the bloodvessels lead to eosinophils congregating at the target organs' blood vessels (eg sinuses, bowel, lungs...) - hence vasculitis, formation of granulomas. A common test for CSS is a nasal biopsy - looking at the sinuses a target organ, for the formation of extravasated eosinophils. It used to be thought that it was the nanopaticulate moiety of toner that was the problem and indeed this has been found to have an eosinophil promoting effect and a direct inflammatory effect - hence the similar problem with diesel vehicle nanoparticulates and heart and lung disease - but the peak number of particles are now known to be from the flame retardant that is used in the fuser unit of the printer or copier or indeed laminator - as it heats up the flame retadant evaporates, then as it exits the machine in the air that is blown through it by the fan, it cools and condenses from a gas into the particles... forming the nanoparticles in 'real time' as it were. Problem is, we often sit next to the busy machine without knowing the risk.
Regards
Rob
Rituximab and covid vaccination
End of the road 
Getting a diagnosis
Wegener's Granulomatosis with polyanginitis
Weather is STILL, too hot for me!
