Sounds like you've had a lot of experiences which haven't been good. My eyes are involved in my Vasculitis and have been from the start. I was given a diagnosis of GPA because of my high ANCA, lung, kidney, joint, nose and eye involvement. My Vasculitis consultants prefer the term ANCA Associated Vasculitis as they say there's so much overlap between the different ones. This summer my sight has been threatened again as my temporal artery got involved so I'm on aspirin now and have been slowly tapering the prednisolone so I'm currently on 9mg. I'm sorry to hear what you've been through and hope the treatment stops any more problems.

Vascular doctors are not vasculitis specialist. Rheumatologists can be, but you have to be seen by one with Vasculitis knowledge. It must be very frustrating not to get a diagnosis.

Have you seen an ophthalmologist? If you have Vasculitis in the eye, they can diagnose you and refer you to a Vasculitis specialist.

Post on PMR/GCA forum and see if anyone can advise you. Good luck.

Pmrgcauk.

I have had 4 years of ? No definite diagnosis, multisystemic vasculitis , overheard pos. GPA , high dose steroids ( side effects weight zoomed to 15 st. , hump on back , swollen moon face). Cyclophosphamide, rituximab, lobe of lung removed as Doctors thought a tumour was driving my symptoms. kidneys not working properly due to ischemic event in pituitary gland, at same time lost sight in left eye, other eye blurred by cataracts caused by steroids, bedbound for 2 years, over 100 consultant appointments. No improvement.

I found myself a functional practitioner, followed her advice . Now at 11 1/2 stone and still losing, I can now recognise myself in the mirror. I am reducing the steroids, now at 8mg from 60mg

I have sorted out my sleep.

Filter my water, cut chemicals out of my personal and cleaning products. Sweat out toxins in a sauna.

I have been on an elimination diet, and found out what foods cause my symptoms.

I’ve had hormones tested and corrected my old meds

I take supplements, eat clean

Now do Pilates, yoga, Thai Chi, ballroom dancing

Feeling better every day.

One autoimmune disease tends to lead to another unless the root cause is addressed. So I would advise you seek out a functional practitioner and heal your gut, which is where all disease starts. NHS will only give you medication to mask your symptoms, and will not get to the cause the the problem will continue.

I found the book , The auto immune solution by Amy Myers a great help.

Sending best wishes

Not knowing the consultants you have seen it is hard to say. I have now been rescued from this sort of muddle by Vasculitis Specialist Professor David Jayne at Addenbrooke’s Hospital Cambridge. He interpreted my non-anca results as MPA and put me on Rituximab and for the first time in six or seven years nerve conduction studies have shown the deterioration of my nerves has stopped. I feel better. He also spotted that my liver function results have been below par and asked my GP to do an ultrasound. No problem with the liver but there was a non malignant lump on a kidney. So I am very grateful to him.

Take care

I have had an experience with sudden, unexpected vision loss in one eye about a year ago; fortunately for me, my sight returned in 10 minutes or so. I increased my Prednisone myself; Followed up with a good ophthalmologist who showed me on an image that the central retinal vein has what she called a "haze" over it which can be treated with laser. I am scheduled to have an echocardiogram Friday to make sure that there is no blood flow problem coming from the heart which caused the sight loss. My carotids were fine too.

So sorry, your vision isn't coming back; do you have GCA?

Sounds like giant cell arteritis which is a form of vasculitis; so sorry.

We all tend to think doctors are sensitive and caring, but most are not. I had a similar experience with losing vision in left eye. I was calmly watching the morning news, when I realized that I was not seeing out of one eye. Fortunately for me, vision came back in about 11 minutes. My carotid on both size were fine. I sought out a "so-called" top doc retina specialist at Wills Eye, and he said everything looked good. Never commented on photos taken in back of eye.

I saw an ophthalmologist, who found that I had a haze over the central retinal vein (not) artery which can be removed by laser. I am so distrustful of doctors that I am afraid to have it done.

In your case sounds like giant cell arteritis? What guidance if any, we're you given to protect your other eye? If you are P-ANCA +'why not insist on another opinion.

It is rare to find a doctor who is competent these days.They are either wet behind the ears or too old to think out of the box. So sorry for your situation.