Not sure if this is the right group but if story…. I was told I had adult asthma in 2018 which I never used an inhaler unless exercising. Then end of 2019 for 3 months I was so unwell (I think now it was covid) ov had shortness of breath, to the point I was fighting for my breathe, fatigue ext ever since, iv had heart scans and ECG as my heart rate is always above 100 all came back normal. I then started to get a phlegm cough but not on my chest it was my throat my GP referred me to respiratory as if had 5 courses of steroids over 5 months, the consultant sent me for bloods for ANCA the gp spoke to about what it is roughly but then I required another course of steroids but it’s time I was weaned off them I felt much better all my symptoms resolved. I then went for breathing tests and now I’m on week 5 of no steroids and I feel my symptoms are coming back slowly, I have a follow up and results day in august as the gp surgery told me they couldn’t access my results for the ANCA test.
I’m just wondering if anyone else on here has had the same or going through the same.
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Casey_87
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ANCA is usually connected to vasculitis. Having said that a positive ANCA doesn’t mean you have vasculitis and vice versa. Please don’t google it as there’s a lot of non info on there. Have a look at the vasculitis U.K. website. There’s also a helpline you can ring. Vasculitis is a rare autoimmune disease and is very hard to diagnose. Steroids will help/mask the symptoms. You could also post on the vasculitis thread on HU. I would have thought if you had an ANCA blood test your consultant was trying to rule it out. Hopefully as he hasn't come back to you he has done so.
Casey, has anyone considered Long Covid, if you feel your acute period of illness was Covid itself?
I have a friend who experienced Covid, before it was really a thing, and a couple of times since. She has had a myriad of symptoms from extreme shortness of breath and fatigue, to a very high heart rate, which she is now taking Beta Blockers to help. She also attends a Long Covid clinic and has a private consultant too. It's a rotten condition.
Obviously I'm not a diagnosing you with anything, but just a couple of things you said chimed with my friend's experience.
I have mentioned to my GP a few times and they said without a positive test results they can’t diagnose me. My consultant went through a full history with me and I did say that I was in perfect health until the time I became unwell and again mentioned if this is long covid. I think once they have done all the tests they want it’s going to come out that I have it. It’s just a shame they can’t diagnose with your symptoms and timing of being so unwell. It certainly is rotten whatever is going on, I’m 34 and can’t even walk the dog as the breathlessness and fatigue is unreal. X
Long Covid is a diagnosis by exclusion. By that I mean excluding other causes, so at best it can take a while and worst, be impossible and require a physician to take a leap of faith.
The bottom line is that Long Covid becomes a matter of treating symptoms, rather than necessarily looking at a structured approach.
So had my review with respiratory this morning and they told me my ANCA blood test had been lost 😢had a repeat sample today. They said my eosinophils count is 1.069 and said this is high, I have lost another 8lb since last time I went (may) though I’m eating still. They have said they think it’s more asthma but as I always need steroids they think I will be referred to severe asthma clinic, though my asthma just appears back in 2018 for no reason. I didn’t question this disease and they said to wait tuntil my bloods are back as they have also repeated my eosinophils. I have done some reading on vasculitis and I do fit all the criteria for the disease But guess will have to see what the bloods say, I have a review in December. Anyone else been in the same position as myself and just wondering do I need to fight them to make sure it’s not vasculitis against server asthma.
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