Has anybody has their vasculitis confused with asthma?
I was disgnosed with eosiniphilic asthma five years ago. I had breathing problems and sinus issues ( I had polyps removed). Unfortunately I am not responding to biologics - benra and mepo had little effect like the xolair I am on now.my eosiniphils and FeNo remain high.
Only courses of steroids offer any relief - 50 mg a day. I became asthmatic in my 40's.
I am beginning to wonder if it is asthma.
Some forms of vasculitis often with asthma and allergic rhinitis. I had 6 operations on my nose for polyps and extreme sinusitis which in retrospect I did not need at all. I had asthma and eosinophilia for years before anyone realised that I had EGPA, a form of vasculitis. In fact all my symptoms were a classical precursor of the disease. The unfortunate thing is that most of the medical profession is completely unaware of vasculitis. I agree with you.You need referral to a consultant with an expertise in that area if only to exclude it. Be forceful about this as the sooner it is diagnosed (if that is the case) the less complications you get. Good luck!
Hi Madbiker1. It’s how it all started for me, It was July and I just couldn’t get my breath, I was prescribed a grey inhaler and that was ok short term then a brown one. I thought I was having my normal pollen reaction at first but that was usually the classic hay fever symptoms but it continued into the winter. Once I was diagnosed and put on steroids it went away apart from odd occasions when my ANCA was reducing. I now very rarely use my inhalers. So in answer to your question, yes! For me it was the start of something much bigger, it’s no coincidence now my ANCA is under control I rarely suffer. Hope you get sorted. Nick
Yes, that’s what happened to me. 8 years of worsening asthma like symptoms, inhalers hardly helped, only relief was when I had steroids. I was told I had atypical asthma, also that I had allergies- they tested for allergies and found none, then said I shouldn’t have any pets just in case. Rhinitis, sinusitis and nasal polyps all increased. I saw multiple respiratory consultants. 7 years in I was referred to rheumatology, who said the symptoms were probably psychological. If only someone had suggested checking my bloods, eosinophils must have been steadily climbing. I ended up in hospital and finally got the diagnosis and treatment. Push for answers, keep asking. The best thing is that you’ve at least heard of vasculitis and this group and can ask doctors about the possible diagnosis. Good luck!
Hey there, same story for me as many on here, except I'm still undiagnosed. I have all the classic symptoms and blood markers for egpa. Breathing has been an increasing issue for some time and inhalers became less and less effective. Chest and back tightness often and my stamina even for normal activities seriously reduced to a worrying level. I'm lucky that I found the Wim Hof Method as I'm making massive progress and haven't needed an inhaler in weeks now. I do Wim hof breathing exercises religiously 3 times a day for over a month and a cold shower twice a day, more if needed. (I worked up the cold shower slowly over time, now I get straight into the cold and it offers much relief from symptoms... A cold bath is great too and I feel symptoms free for 2-3 hours and have less exasperations). Using the WHM has SERIOUSLY improved my vascular conditioning I feel which I attribute to my lessening symptoms... and it's lowered my resting heart rate from around 90 (which was getting worrying) to below 60. Life is easier. I wanted to put this on here in case it helps somebody else in a similar position as it has cost me nothing and given me a life back.
I can report a similar journey. Diagnosed with asthma. Symptoms of tiredness, out of breath, sinus issues and a catalog of other stuff plus some suspicious xray images meant my initial diagnosis after asthma was lung cancer. A PET scan fortunately very quickly after that at the Royal Marsden dismissed lung cancer and they suggested Churg Strauss. Local hospital ignored and diagnosed Eosinophillic Pneumonia for which the treatment was high doses of pred. Felt great for a while but as soon as I started to reduce pred all the symptoms came back. I was also being treated in respiratory. After a lot of research and help from my excellent GP (and also my wife) very quickly got a referral to a specialist clinic and a diagnosis of Churg Strauss. Mepo/Benra is prescribed here only to treat severe Asthma and supposedly shut off the production of Eosinophils at source in bone marrow. For me Mepo has worked to a certain extent for my asthma and egpa. I have managed to reduce pred to 5/day but am flaring up with all sorts of stuff since dropping below 7.5/day. Here in the UK NICE only allow us to be prescribed 100ml Mepo a month and only for severe Asthma. If we lived in the USA we would be getting three 100ml doses a month for EGPA and there lies the problem. Same issues with Benra which I believe even in the USA is only prescribed for Asthma. Again in the UK we have reduced recommended dosages. One day......
I was loaded up on Benra in the beginning and it did make a difference however once down to two monthly things fell away.My concern is that by the time I get somebody to listen it may be too late.
Where you live? There is an egpa specialist at St Thomas in London and I make the hack up to Addenbrookes in Cambridge. You need you GP to refer you. I will dig up the name of the St Thomas person..others here will know it..and get your referral.
His name is David Jackson - he looks after me and he and his team have been amazing.
Thanks for your replies. I am surprised I have not been referred to a rhuematologist but the NHS is not good at the moment. I have also noticed I am itchy quite a lot - I also have sore knees and shoulders and abdominal pain.
Insane itchiness goes with the territory as does joint pain. Have they given you omeprezole to counter the abdominal pain from the pred?
Yes I have omeprazole. I am in the North West.
I find tea tree cream best to counter periods of insane itchiness..other will have their faves as well
Over the weekend blisters have appeared on the soles of my feet - I have not wore any new shoes and it has not been that hot. One of them was the size if a 10p piece - it popped but is filling up again. I bathed my feet etc. but I have just taken pred to see if that helps.
I read that multiple blisters appearing at once can be a sign of an auto immune disease.
Skin problems can be a symptom of immune disorders.
If you’re in the northwest are you close to Liverpool? I went to Liverpool Royal for diagnosis and initial treatment. I was under nephrology because I was in kidney failure, but the consultants there were very knowledgeable about vasculitis generally (I had a lot of other symptoms too). If you can get a referral there then they’ll send you to the right people to get a biopsy.
The hospital have contacted me.
I will not be given any more xolair.
They have invited me into a clinic - vasculitis is being considered as being responsible. I have had mepo, benra and xolair - they have barely put a dent in it.
I explained about the sores that came up on my feet - I have also just had a colonoscopy and CT scan - the colonoscopy was clear - I am waiting for the results of the CT scan.
I became asthmatic in my mid 40's. I also had nasal polyps. Only large doses of pred offer any relief. For some time I wondered if I had EGPA.
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