Newbie still with unsure diagnosis

[Casey_87]

UPDATE!

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.

Thanks

Casey

[Main1234]

Hi Casey_87 you may find it beneficial to contact the vasculitis uK help line. They are extremely supportive and knowledgeable and will be able to point you in the right direction re diagnosis etc.

if you do have vasculitis ( lots of different types all rare) December seems a long time to wait.

Good luck in your journey and please give them a ring .

[vivdunstan Volunteer]

Echoing the advice to have a chat with the folks on the Vasculitis UK helpline. You can find their contact details at vasculitis.org.uk/helpline

Your ANCA blood test results will come through quite quickly. It would be wrong if you have to wait till December to find out if it suggests vasculitis.

Hope you hear soon! Your weight loss is also concerning.

All the best

[Investigator1]

Hi Casey, you poor thing. You won’t want me to say this but many people will resonate this but most of the time with Vasculitis pre diagnosis you will have to fight to get them moving. The quicker the diagnosis the quicker the recovery, the helpline is a brilliant facility and will help put your mind at rest. December in pre diagnosis terms is a long way off. Try and get things moving, come back on here and let us all know how you get on, we will try and help with advice.

[eh66]

I will echo the weight loss concern. When I was in the ravages of Vasculitis; pre-diagnosis, I lost 7kg in about 3 months whilst eating normally. At the time I didn't realise why my urine was bright orange basically I was peeing my muscle away. Hopefully you will receive the results soon. Mine took a few days I seem to recall, then I had a kidney biopsy to confirm it.

[Mooka]

Please ring the helpline as others have said. An ANCA blood test is just a guideline not a definitive test for vasculitis. December is a long way off to wait with your weight loss. In answer to your question yes most of us have been from one department to another to get that diagnosis. Good luck.

[Churg]

I agree with all the others. Keep ringing up for the test results ( try the consultants sec) as they may well be behind with the paperwork. Get your GP to ring up and get you an urgent appt when they have the results. You can get severe asthma with vasculitis so unless the severe asthma dept is wise to vasculitis then you are no further forward. Be forceful even if , by natural inclination , you are not. Vasculitis is a disease best not left hanging around. Vasculitis helpline will tell you the name of the nearest specialist and ideally you should be referred to them quickly. The eosinophilia is possibly a factor pointing to vasculitis. You can avoid the serious complications of vasculitis by being diagnosed and treated as soon as possible

[Madbiker1]

I had tests earlier in the year which were ANCA negative however this is not a definitive measure.I now find that my third biologic has not had much success - I need 50 mg of pred regularly to have a normal life. Which is too much.

I suspect my eosiniphilic asthma is becoming vasculits but until I see a rhuematologist nothing will happen.

I hope you get sorted.

[Casey_87]

Thank you all. Just had update on bloods

My ANCA bloods were negative and eosinophils 0.5 from 1.069 neutrophils slightly high. Just got keep eye on the cough I have as it always comes back after steroids. They can’t rule out some form of vasculitis due to other symptoms. Back to see the respiratory consultant in January but if become worse then need to be seen before. They thinks it’s server asthma but I’m still not on the same path. 😊