Any advice? : Hi all. I’ve just joined here... - Vasculitis UK

Vasculitis UK

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Any advice?

Blueybear profile image
Blueybear

Hi all. I’ve just joined here and recently been diagnosed with ANCA vasculitis. I’d never heard of it and had a series of tests. I’d love to hear any stories or advice from any of you.

13 Replies

Firstly, please visit the Vasculitis.org.uk website. Loads of info and help there. You will also get lots of help if you belong to Facebook and join the Vasculitis page there.

Blueybear profile image
Blueybear in reply to Nadine99

Thank you Nadine99. I’ll take a look.

Hi,

Welcome to the forum, this is a great source of info and support when you need it.

If you don't mind me asking, what were your symptoms?

I had lost a lot of weight Nose bleeds, coughing, lung damage, sinus damage, feet problems and much more. Took the docs months to diagnose my condition. However I've been on my meds since 2014 and ( touch wood) all has been mostly ok.

Keep safe

Cheers

Sfs

Hi sorefeetsoldier. Thank you for your welcome and reply.

Not at all... my onset was a red eye. Scleritis. I’d was given blood tests as this was now my 3rd time at the eye hospital.

GP confirmed ANCA but I had no idea what that meant.

I’ve suffered a bit like yourself with slight nose bleeds, joint pain and shortness of breath then more recently headaches and extreme tiredness.

There are many of these I could put to age, environment and just general health so I was very overwhelmed with all the tests and images and yet to have a medication plan agreed.

Reassuring to hear your meds are keeping things at bay.

May I ask what you’re prescribed.

Stay safe too.

BB

Hi BB,

The meds I take are 15mg prednisolone, 10mg azathioprine, co,trimoxazole. And a few others for bone density because long term pred isn't good for the bones.

I am glad you diagnosed fairly early.

I recall going to A and E once a week and being told I had MAN FLU , if it wasn't true it would be funny only when I had kidney failure they took my case serious.

All the best and take extra care in these difficult times.

Regards

Sfs

Not many Dr's have heard of it either so you will need to be informed and advocate for yourself!!! Make sure you are under the care of a specialist centre.

Blueybear profile image
Blueybear in reply to AmyS1

Hi AmyS1. Thank you, Sound advice... I’m beginning to realise this is the case and there are so many reading on research platforms. I’ll look for a specialist centre. BB

Hi. As Nadine99 said the VUK website is full of useful information and more importantly its reliable information. As a starting point it is important to ensure you are seeing someone with specific expertise in treating vasculitis. There are various centres of expertise around the country. The helpline should be able to give you more information. The key to a good outcome is early diagnosis and the right treatment. There is a bit about me on my page. Chris

Hi Chris. I’m now researching for someone with specific expertise in this as it’s all so confusing and with so many symptoms and types I’m now only just understanding just how this mimics so many other ailments and symptoms. Thanks for directing me to your page. I’ll take a look.

BB

Hi Blueybear

I’m sorry to hear of your diagnosis. You’ve had some great advice. When things get back to a bit of normality hopefully you can find a support group near you. In the meantime the vasculitis U.K. website is a mine of information. I would stay away from some of the other sites that will give you wrong information. You need a good knowledgeable doctor and to learn a lot yourself as most doctors won’t have heard of it. You should also try not to fight your way through any fatigue. Listen to your body and rest when you need to. Good luck and let us know how you are getting on.

Blueybear profile image
Blueybear in reply to Mooka

Hi Mooka. Thank you. Yes it’s been a difficult time.. I’d in humour decribe it like being put into a washing machine on spin with a load of word cards naming tests, times, appts, symptoms and medications and treatments. No chance of catching enough to make any sense out of it.

I agree with your advice of resting.. thankfully I’m trying to do this and have found it helps. I hope you’re managing well. I’ll keep you updated.

BB.

As others have said defo look at VasUK site, ANCA really isn’t a factor so much now. Years ago people were mainly positive. Now it’s about 50/50 positive & negative ANCA, at the time it was thought it had a bigger bearing than it does. It’s important to know what type of Vasculitis - various done rarer than others, some common symptoms, bit varies enormously and even if have ‘sane’ as someone else quite likely symptoms will vary. It’s very important to see a specialist in this field - it’s no 1 thing - who has patients, not just read up!! Because it’s still quite rare therefore specialists are not in every hosp or town/city. VasUk can help it out a call out where you are, someone will have an idea where best specialist(s) to you will be. Treatments vary now, but are mostly drugs to try to ‘manage’ our immune system from attacking you!! It’s quite well managed now compared to when I was first diagnosed - it was very much doom & gloom then. Still no cure but so much more to help. It is an illness that can cause a lot of issues attacking various parts & organs of our bodies. We can go into remission (some for long periods), lots continue to lead very active lives and wirk as well. Others have more complex issues that means the disease effects quality of life considerably. Hence importance of good specialist up to speed with your specific type & research/drugs being used, so you get best options for you. Take care, all the best. Stay safe.

John_Mills profile image
John_MillsAdministrator

I was diagnosed with ANCA associated Vasculitis exactly 20 years ago this month. The type I have is called Granulomatosis with Polyangiitis ( GPA ).

There is a wealth of information on the VUK website as others have mentioned. What is ANCA - vasculitis.org.uk/about-vas...

Vasculitis by vessel size - vasculitis.org.uk/about-vas...

Personal stories living with Vasculitis- vasculitis.org.uk/living-wi...

Also you can see and hear patient experiences of ANCA Vasculitis via this website myancavasculitis.com/

It is “Essential” you see doctors who have knowledge, experience and understanding of Vasculitis.

The VUK helpline is available 24/7 either by phone or email if you want or need a one to one chat

vasculitis.org.uk/helpline

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