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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Hi Casey,Sorry to hear of your demise, it’s been going on as long as mine has. Your first port of call is an urgent referral to Rhumatology, an anca test can be positive or negative it doesn’t mean you have Vasculitis. Gp,s are bloody clueless when it comes to specialist areas of medicine, have you not seen a rheumatologist?
Your GP sounds like a moron, of course he can get your results, he just needs to pick up the f ing
I haven’t been seen by anyone except the respiratory consultant as I’m asthmatics which came from nowhere about 4 years ago. The respiratory consultant sent me for bloods and then an the ANCA blood test paperwork was sent via post. The GP reception told me she couldn’t access them but I do have an appointment mid august for a review so assume will get them then, I’m going with the fact that they haven’t called me so maybe good news. It’s taken 3 GPs to see before referring me back to respiratory as they thought it was my asthma. I have read about vasculitis and it sounds awful though some of the symptoms match mine as I’m always well on steroids but unwell as soon as iv finished. I have t been referred to rheumatology or even been told where I’d be referred to if I have an autoimmune disease.
CaseyAs your issues have been going on for a while and respiratory don’t have any answers yet ask for a referral to Rhumatology. I have breathing issues too, I sacked my first consultant, I have seen the other one in 6 months, to busy doing private healthcare. Good luck and keep nagging the fu——- 😎
Hi Casey_87. I know different areas are different and I am not a medical person so there’s my disclaimer so I can only relate my experiences. Just before diagnosis of GPA I had shortage of breath and Phlegm for about 3 months. Firstly on my area (North Yorkshire) we are some distance from Hospitals but we come under South Tees and my Consultant is at James Cook 32 miles away…….there is a point to this I promise. I have bloods done when I see my Consultant and in between at my Local GP. Both have access and have interpreted my ANCA readings for me. Several different GPs locally and even the Consultants secretaries so I don’t get the fact they can’t get results but hey! I could be wrong. Secondly Steroids only dampen down the Immune System they have limited effect on ANCA levels that’s why they are administered with other drugs like, Cyclophosphamide, Methotrexate, Rituximab etc so for a medical person to think ANCA to just go away with steroids is strange. I think you have this opportunity in August to take check of what is happening but I wouldn’t wait till then personally, I would be on the the hospital to get some answers. I hate doing this but sometimes you have to. Nick.
Yes, they said it was slightly high but can be normal with people with asthma I was told. I did argue with them and say i developed asthma suddenly back in 2018 which I’m also wondering was that the start of it all.
zoe69AdministratorVolunteerVasculitis UK in reply to Casey_87
Onset asthma and high eosinophils and an ANCA test make me think they consider EGPA as diagnosis. Note that patients with EGPA are usually ANCA negative.A referral to rheumatology for investigation should definitely be the next step
Yes with EGPA it’s about 60/40 anca neg vs positive. But for EGPA it’s a bit of a moot point the key sign is high eosinophils, high C reactive protein (CRP) and of course feeling like you’re about to die! Don’t let it get to that point though 🙂
Hi My CRP came back normal but my ESR was slightly high. I did get to that point about 6 weeks ago and got told off by GP we should of called 999 but instead waited for surgery to open 🤦♀️ They gave me course of steroids but to be weaned off which iv been off them for 4 weeks and now have started to feel unwell again.
I would wait for your appointment which seems to be 2/3 weeks away? I suspect your consultant took many other blood tests at the same time and these together with the ANCA will give him some idea of where your problems stem from. I certainly wish the respiratory doctor that I first saw had taken ANCA blood tests. The fact that yours has suggests that he is on the ball. He can then refer you onto any department necessary for further investigation. I’m sorry if I scared you yesterday suggesting that he was testing for vasculitis. Most GPs don’t understand vasculitis as it’s a rare disease they may only see one case in their entire career. When you go for your appointment take someone else with you to listen in if you’re allowed and ask questions. In the meantime take it easy and try not to worry too much. Do let us know how you get on though.
Late adult onset asthma and raised eosinophils sounds like it could be EGPA. Please don’t mess around with this is it can be a very damaging disease impacting your key internal organs (heart, lungs, liver, kidneys) as well as causing nerve damage in your hands and feet. You must get a specialist to run tests (CRP, eosinophils etc) and get a proper diagnosis.
I speak from experience had late onset asthma last year (came out of nowhere) and was worse 2 weeks of my life until I was finally diagnosed. Since then I’ve been extremely fortunate to have some amazing treatment both from the hospital that first looked after me and now the EGPA specialist that has got me back to fighting fitness. Please get a diagnosis.
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