Hi all! I’m trying to access their website but without success. Similarly emails fail to send...I’m not diagnosed EGPA but have asthma, chronic sinus problems, granulomatous middle ear damage, intermittent high eosinophils (5.2), ANCA -, and pulmonary infiltrates (ground glass appearance). My breathing problems come and go but the sneezing, sinus pain and tiredness is constant. I’m worried that the strategy is to watch me until I get a neuropathy or other vasculitis problem. I would like to get a diagnosis before I get any permanent damage. Should I push for further investigation and if so what? Recently I had a flare where I had severe chest pain but only for 2 mins and I was worried it might be cardiac. I’m medically trained and probably know too much. I’m in the North West so any advice would be welcome!
Churg Strauss Association-does it still exis... - Vasculitis UK
Churg Strauss Association-does it still exist-diagnosis advice please
Hi a you have a lot of symptoms and I would really push your GP to refer you to Manchester Royal - Kellgren centre which is a specialised centre for Vasculitis / Lupus..Good luck !
Hi I do have Churg Strauss and your symptoms sound like they need to be investigated. I’m treated by rheumatology consultant at my local hospital Airedale but also at the Manchester royal who have an excellent rheumatology team. A clue to my diagnosis was picked up after allergy testing at hospital when the respiratory consultant wrote in his notes possible Churg Strauss. However he didn’t see it as urgent & so didn’t call me back in and I was diagnosed after presenting at A&E with severe back and leg pains & suffered peripheral nerve damage. So I agree do try and get to the bottom of what is wrong soon. My GP referred me to Manchester as I wanted a more specialist centre to have input into my care. Good luck
Hi JG and Katie18. I forgot to say I’m late 40s and female. Thanks for replying and for the Manchester Royal recommendation. I really appreciate it and hope you are both as well as you can be given your diagnosis. It sounds like you have been through a lot. I saw my respiratory consultant yesterday and she doesn’t think any further tests would change the management as I’m not ill enough to warrant any serious treatment. I asked her about the risk of neuropathy/cardiac problems and she said it was very low even if I did have EGPA. I think the ANCA- makes her think it’s likely not vasculitis. My breathing is currently ok on inhalers which is her main focus. But I’ve only just got over an episode where I was breathless for 2 months. She doesn’t think it’s helpful to have a label at this stage. Just to call it ‘eosinophillic lung disease with infiltrate plus sinusitis/rhinitis. ‘She says to get a eos count from GP when ill and see her if necessary. I have read that eos count is not a good tracker of disease but symptoms are? But she’s sent me for ENT referral and CT sinus as my sinus symptoms have not responded much to antihistamines and steroid spray. I’m hoping they might biopsy something-I have a lot of bleeding and discharge from my nose and have also had granulomatous middle ear disease requiring several ops and a hearing aid. I think I’ll see what comes of the referral before pushing to see someone in Manchester. I don’t know how sympathetic the GP will be to the idea as I look well mostly. Do you just ask for a referral to be made? I would definitely want to go there if I got worse. Having a medical background can work against you as you can look like ‘ worried well’. It’s great to find people on hear who understand. As you can tell I feel quite confused about how much fuss to make. Any further comments very welcome.
Hi, am female and 55. I have the same symptoms as you, however also have nerve damage in both feet. I was diagnosed after admission to A&E in April and am now undergoing treatment. I agree with others and suggest that you see a Rheumtologist ASAP. I'm in London under Dr Pyne at Royal London who sees patients from all over the country. Good luck !
Whilst EGPA, along with GPA and MPA are the types of Vasculitis associated with ANCA, just because you are ANCA negative, vasculitis shouldn't be ruled out. I believe this is particularly the case for EGPA where ANCA is not always present.
Your Consultant may not feel it’s helpful to have a “ label “ at this stage but how do you feel?
You have ground glass infiltrates and hearing loss secondary to granulomatous disease. All patients with EGPA should have a cardiac assessment as often people aren’t symptomatic until the damage is done.
EGPA is one of the rarer Vasculitis variants, how much experience does your current Consultant have of diagnosing and treating it? To a certain extent all the Vasculitis variants require “ big gun “ treatments as they are potentially life and organ threatening diseases. You may have an ENT referral but will the ENT surgeon have any knowledge and experience? Biopsies can yield false positives unfortunately.
No one will care about your health as much as you do, if your current Consultant is wrong who is it that will bear the consequences? You are concerned enough to post on here for advice, don’t talk yourself out of taking it.
Thanks Jake. I hope you’re responding well to treatment. It was actually your recent post about diagnosis which set me thinking about the risks of just seeing what happens next. But in fact that’s all any of us can do as even with diagnosis and treatment there’s no guarantees. Without worse symptoms I wouldnt warrant or want the heavy guns treatment like you are having-with all its nasty side effects.
I have microscopic polyangiitis, not Churg Strauss, but I comment here on your points about "Without worse symptoms" and "treatment .... with ..... nasty side effects".
My symptoms were minor - slight loss of kidney function (CKD stage 3) and a purpuric rash which caused no discomfort. Nevertheless once a kidney biopsy indicated vasculitis I was given the "hit it hard" treatment of cyclophosphamide and steroids followed by azathioprine as maintenance therapy. I was of course told of the possible side effects, but was assured that if these proved too much for me it would be open to me to reduce or cease the treatment or try alternatives.
As it turned out, the side effects were minimal and ceased once I moved to and became accustomed to the azathioprine. Even better, the treatment has been succesful in that, nearly five years after diagnosis, my kidney function has got no worse.
It seems to me that your symptoms are far from minor and they clearly affect your daily living. Also bear in mind that vasculitis which is undetected or untreated can suddenly and without warning become much more serious and cause damage which may be irreversible.
Therefore I suggest that the fact that your symptoms may not be as bad as they might be, and your concern about the possible side effects of treatment, should not deter you from seeking a referral to a specialised vasculitis centre. Both these points are things which you can discuss with the consultant.
Hope this helps.
Chris thanks for input. Yes ANCA negative is more common in EGPA, only 40% are +. I did check the respiratory consultant knew that yesterday. I even pointed out risk of cardiac damage is higher in ANCA negative. I think getting CT/biopsy evidence of sinus trouble would help my chances of referral. I do sneeze and sniff all the time and have sinus and face pain constantly.
Jgold. You are right and your treatment was clearly timely and justified despite your symptoms being mild. The difference with my situation is that you had biopsy evidence. I suggested a bronchoscopy/biopsy/washings which she had mentioned when she thought I had scarring on an X-ray last year but it didn’t happen as the ‘scarring’ went with steroids. She said the risk of the procedure wasn’t justified given I wouldn’t warrant immunosuppressive treatment currently. Basically she said it wouldn’t be given prophylactically.
The circumstances of my biopsy were that GP blood tests (for annual review of coronorary heart disease) showed loss of kidney function. She referred me to my local hospital renal department. The consultant who saw me at first felt there was nothing to worry about. However the blood tests taken at my meeting with him unexpectedly came back showing ANCA positiive.
Although he personally was not a vasculitis specialist three of his colleagues were, so (perhaps fortunately for me) he knew sufficient about ANCA and vasculitis to order the biopsy.
If I read your points correctly, at least part of your problem is that you have doctors who won't give you the referral needed for proper investigation. How you solve that one is beyond my knowledge, but I suspect the volunteers who run the Vasculiis UK Helpline vasculitis.org.uk/helpline (phone 0300 365 0075) will be able to give helpful advice.
Tynemouth. You are right. I have read all the things you are saying and know I need to take action. I shouldn’t let the awkwardness of rejecting the chest physician’s opinion stop me from taking charge and the ENT referral is unlikely to be diagnostjc. This thread has impressed my non medical husband and he is also telling me to ask for referral.
Churg Strauss Syndrome ( EGPA ) is so very rare around a1000 recorded cases here in the UK , population 66 million. So that makes you extremely rare. It’s essential you are seen by doctors who have knowledge and experience of EGPA. You can read about EGPA via the VUK website vasculitis.org.uk/about-vas... you can also read Emma’s story if you follow this link vasculitis.org.uk/living-wi...
Emma was seen at her local hospital and became increasingly unwell and was finally referred to Addenbrooke’s in Cambridge by her GP. You can ask your GP for a referral to the Kellgren Centre at Manchester , they are a multidisciplinary team for Lupus and Vasculitis and led by Prof Ian Bruce and Dr Ben Parker. Alternatively you could travel to Addenbrooke’s and be seen by a member of Dr David Jaynes team or Thomas and Guys in London.
Thanks everyone. I have made an appointment with my GP to ask for referral to Manchester. I will update when I know anything new
Just popping in to say I went to GP today and got a referral to Manchester Kellgren centre.Thanks to everyone for support and encouragement- I would not have pushed for a specialist referral otherwise.
6 month waiting time-was expecting several months but that’s a long time.
Not what you're looking for?
You may also like...
Churg Strauss new diagnosis.
EGPA/Churg-Strauss? New Member, recent Diagnosis
Symptoms worsening, waiting for appointment-advice please!
Just diagnosed with GPA and trying to keep positive
Churg Strauss
Related Posts
Wegener's Granulomatosis with polyanginitis
I have just been diagnosed with Vasculitis WG and feeling very confused and would appreciate any advice from anyone who can help?
I’m new, confused and looking for support 
Lost sense of smell and taste
New to Vasculitis, Advice on symptoms and diagnosis please ?
