Vasculitis

[Thecatisboss]

Got told by my GP on Friday that I have Vasculitis which is probably the result of an unknown autoimmune condition.

I know I have Graves’ disease (from blood tests done when I thought I was menopausal with no periods) which showed Graves antibodies, however no other symptoms at all and thyroid levels which were high 4 months ago are now normal with no medication.

I’d never heard of vasculitis before and am wondering if anyone has heard of it with an autoimmune condition? I have to go back for further tests to see it’s affecting any other blood vessels other than my skin which I am feeling worried by.

I’m so sorry about this - I know any diagnosis can be so scary, and one you don’t know anything about can be even scarier.

I have two rare auto-immune conditions (they did my genetics and unfortunately found several abnormalities that made me more prone to these - just crap luck), and one of them is Behçet’s disease, which is a condition of vasculitis and an autoimmune condition.

There are several possible causes of vasculitis - diseases like Behçet’s or Kawasaki disease; rheumatic diseases like RA or lupus; or even some infections like hepatitis B.

I would imagine you may have tests to help determine if your have an autoimmune condition and which one. Treatment for your vasculitis will be based on how serious your symptoms are. They may involve steroids like prednisone, which I’ve been on sometimes for it, and immune-suppressing drugs, which I’ve also been on.

Please let me know if you have more specific questions and I will try to answer them. While this diagnosis may seem scary, it’s completely treatable and you’re on your way to treatment now. Good luck!

Thanks very much for that, really appreciate your message. Sorry to hear you've 2 auto immune conditions

I've had the vasculitis for 10 months showing as weird bruising in my skin so it's taken a while to diagnose (& a skin biopsy!)

Been back for more blood tests today and wee sample to see if kidneys affected.

I know my gran had RA and my Dad has been on high steroid doses for asthma from which he now has osteoporosis so thats probably why i feel worried having seen some of the effects of the cure!

Thank you for all the information you've shared it's really helped.

I’m sorry to hear about your dad! But they do monitor much more closely for things like that now. For example, I’m on a medication that could cause kidney damage, even though it does so only rarely, so I have a blood test around every two to six months to be on the safe side. They really don’t take any chances, because the last thing they want is your life to be even harder (and, to be honest, more expensive to treat!).

So yes, whatever medication you end up on, in my experience and the experience of everyone else I know on these drugs, they will monitor you pretty carefully, so as difficult as it may be, try not to worry about going down the same path as your da.

Good luck and I really hope you have clear answers soon.

OP the only thing I know about vasculitis is that the skin can sometimes become ulcerated. So it's important to try not to knock it. For example, if it's on your ankles or lower legs, watch out for people knocking their shopping trolley or buggy into you. A relative had this problem years ago, so I'm no expert, but remember that her ulcers took ages to heal with steroids.
Care and prevention must be a lot better now.

Thanks for the reassurance about monitoring your quite right things should have improved from 20 years ago!

Diana - Funny you should say that. I was doing a cross country race 4 weeks ago and fell on rocks in a river, the bruise still hasn't healed. I'll keep an eye on that now (and try not to slip on rocks again!)

First of all, sorry to hear of your diagnosis...it can be very frightening when you first find out, but at the same time a relief to get a diagnosis and piece it all together
I was diagnosed with vasculitis last year after feeling unwell for 2 years
Was extremely fatigued and had problems with my eye ( iritis) , joint pain , skin rashes and finally awful ulcerated areas on my legs
I had a skin biopsy of the ulcer and I started on high dose steroids immediately ...followed by Methotrexate
I have monthly blood check while I'm on methotrexate and I'm slowly tapering my prednisolone...I'll be on this for at least another year before trying to stop Methotrexate ( hopefully...although may be on it much longer if I get a flare again)
There's a fantastic support group on Facebook ( Vasculitis UK) as well as their charity website which give a much clearer understanding of this disease.....there are 17 varieties of Vasculitis, so it's important you get a clear diagnosis so you get the correct treatment
www.vasculitis.org.uk
www.facebook.com/groups/VasculitisUK/
Many Drs have never heard of Vasculitis so it's also important you're seen at a specialist centre if possible and not treated by someone with no knowledge of disease- I was initially diagnosed by dermatology but have since been followed up regularly by rheumatologist and rheumatology specialist nurse
( the Vasculitis charity can point you in the right direction....they have a fabulous helpline)

Thanks very much for the info on that's really helpful. I've an appointment now through for early Oct with the rheumatoid department at the local hospital.

Thanks again i'll be joining the facebook group and trying the charity too.

My dad had vasculitis alongside a rare autoimmune disease which he never got a diagnosis for. He woke up one day unable to move, crushing headache, vomiting, swollen eyes and a dark rash, joint pain. Spent the next six months on a ward. They thought possibly Wengers but it didn't quite fit. Even addenbrooks were stumped.

Hi. My DH has vasculitis.

It started as a rash on his feet. After a year it was getting worse and he saw the GP who said it was self-limiting and would go away. A year later he saw another GP (it was on his thighs by then) who said it was like a childhood vasculitis - that can affect the kidneys and liver and that it was usually self limiting. He asked to see a dermatologist who did a biopsy which confirmed vasculitis and she gave him a course of prednisolone and some cream. He started to get numbness and tingling in his feet and was sent to a neurologist who did nerve tests and told him to come back the next year.

All was well for a while, the rash improved. One day he got really bad nerve pain in his arm and his hand went numb. There were red patches on his hand so I assumed vasculitis. The GP gave him some prednisolone and said it could be MS and he saw the dermatologist who said everything was going ok and it wasn't anything to do with the vasculitis as the sort of vasculitis didn't cause nerve damage.

Fortunately, he had an appointment with the neurologist who sent him for another nerve test and booked him in for a nerve biopsy and a lumber puncture and an op on the nerve in his arm.

She, however, wasn't convinced by the dermatologist and got the nerve conduction and biopsy done asap which confirmed vasculitis damage to the nerves and he then saw the Rheumatologist who put him on a large dose of prednisolone with stuff to combat the side effects. This was tapered off, immunosuppressants started, increased, and now he is at the end of decreasing these - nearly off them! Lots of blood tests and check ups.

The rheumatologist is, very fortunately, a vasculitis specialist. He says that not all vasculitis can be classified into the named ones. His does not show up on blood tests which means they have to be very careful and keep an eye on symptoms.

The nerve damage seems to have mended too

The treatment has not been too bad (we were originally expecting an chemo drug that makes you lose your hair )

The worst bit was trying to get a diagnosis, and the nerve pain.

I have vasculitis (microscopic polyangiitis). Diagnosed at 18 in 2005. Life threatening complications in 2006 (pulmonary haemmorage; life support; a vascular necrosis in both hips and knees leading to eventual hip and knee replacement). Have been on all the meds associated with this particular one (which has also lead to chronic kidney disease as it’s connected!) - prednisolone, cellcept, cyclophosamide, rituximab, imuran...

BUT: while all this has been rubbish, I honestly live a fairly normal life bar the odd health hiccups! Since diagnosis, I’ve lived and worked in America, London, Helsinki and now NI. I have a beautiful little girl (after being told emergency treatment in 2006 would mean I couldn’t), a wonderful husband and continue to work.

It’s a tiring illness, but if you work with your doctor, and try to live as healthy as you can (but still enjoy yourself - I’m typing this with a glass of wine beside me 😉). I find just knowing and respecting the serious of vasculitis - it is a life threatening disease, a lot more than just skin ulcers (also depends on what you have as they all affect different parts of body) - but learning to live with it, keep your appointments and take your meds, that’s the best you can do. Happy to answer any questions at all, but Vasculitis
UK are fab and have lots of info! When I was diagnosed 13 years ago it was almost unheard of (especially in 18 year old female) - thankfully there is so so much literature and support out there now xx

My Mum was diagnosed with Chur Strauss In 2013 and it took a while to get symptoms under control but is now on the chemo drug and hasn’t experienced bad side effects, when managed and monitored regularly it appears to be controllable.

Churg Strauss