Unsure on what this all means. Any advice would be very much appreciated.

[Sarah-38]

Update on my previous post. My 17 year old daughter has been to see a Rheumatologist and the results for her bloods came back yesterday.

She has made an action plan for further testing I think but would like some advise on what she has said. I’m not sure what it all means and what and if a diagnosis is/had been made.

Thank you 😊

[Mooka]

Hi Sarah-38

I can see why you are struggling. I think it says possibly a diagnosis of HUV vasculitis.org.uk/about-vas...

But it does put a question mark against this and many of us are misdiagnosed before getting the right diagnosis.

There’s additional blood tests to be done at addenbrookes immunology dept. They are lovely and very thorough. I think your best bet would be to speak to the vasculitis U.K. helpline and go through it with them. Good luck your daughter will have a bit to go through but will improve with treatment.

[Sarah-38 in reply to Mooka]

Thank you 😊

That’s what I was thinking. It’s a relief after three years finally feel like we are getting near to answers. Hopefully these new blood test will bring to light more answers.

We were in London and she was also diagnosed with spontaneous urticaria, the above HUV would explain this I guess.

Thank you so much for reply x

[Mooka in reply to Sarah-38]

Sadly a lot of us take a while to get a diagnosis. It was a relief for me when I finally did. I hope the tests bring her a diagnosis and you can both finally start the journey to a better quality of life. She certainly seems to have gone through enough already. Do let us know how you both get on. X

[SCMW]

Hi, So the letter mentions SLE & HUV, so lupus and a rare form of vasculitis. They’ve also diagnosed POTS. It looks like you have a great Rheumatologist who is working through the options. I had one diagnosis at 18 and didn’t get my diagnosis of Behcets until my late 30s. With the right immune suppression she will be able to get through life more easily than struggling on her own & they would also take better care of her if she chose to have a family. Best wishes.

[Theidealistrealist]

I can't quite see the whole letter but it looks very thorough. I have vasculitis, though you'd barely realise it from looking at me! Which i think for many can be part of the anxiety and journey.

I take prednisone and hydroxychloroquine. Hydroxychloroquine is fairly low key but can really make a difference to a base line level.

For me personally i really notice not been on the steroids, 7.5mg is my maintenance dose, 15mg Amber and 30mg red alert!

It can take years or longer to get a diagnosis, even then they can change! Many are check boxes, some people have little or no measurable symptoms. But what's important is getting in that ladder of consultation care, which this letter clearly shows.

What i would say is take a broad approach to all this. Rheumatology and conventional medicine is critical for care, but take a look into functional medicine, dietary factors, supplements. Don't jump down the rabbit hole, but along with steroids, diet and supplements make a huge difference for me, and many others..a simple win is upping lean protiens, greens, looking at anti inflammatory low histamine foods

[Sarah-38 in reply to Theidealistrealist]

Thank you 😊 I will most definitely look into the dietary side of things. Im reluctant to rely just on tablets for her.

[artists]

My blood tests came back very much like your daughters lupus / HUVS . Although it sounds awful , with treatment l have felt so much improved .

Mine started when l was in my early twenties it has taken many years to get to this diagnosis.

Hopefully with this early diagnosis your daughter will live a long healthy life.

[Sarah-38 in reply to artists]

Hi thank you for your reply. If you don’t mind me asking what treatment your on.

Trying to get our heads around this all. Although it’s been such a relief to finally get some sort of answers. At one point I really thought I was going mad. Back and forwards to the doctors pushing for someone to take her symptoms seriously. First visit to Cambridge and we have got this far already.

Again hope you don’t mind me asking but what sort of symptoms do you suffer with ?

Sarah x

[artists in reply to Sarah-38]

I live in Suffolk and after forty years was finally sent to London for a second opinion. Until then it was assumed l had lupus , that did not show in blood tests.

My symptoms originally only lasts a few days , severe pain , vomiting, diarrhoea and headaches. I only got pain killers and discharged.

Gradually my symptoms became more frequent and debilitating . After losing a lot of weight l was sent back to a rheumatologist.

I have heard that Cambridge is excellent it’s knowing which blood tests to do . I was put on hydrochloride and colchicine. As l still had problems , high blood pressure, palpitations and to a less degree other symptoms I started on infusions of rituximab.

Finally I feel really well . I wish l had been diagnosed years ago , but am very grateful to the doctors at the royal free just because they listened ,so good luck now you have a diagnosis I’m sure things will improve dramatically. Let me know how things go it’s difficult when you look well but feel dreadful. X

[cazf]

Hi huv and sle same as myself I'm on hydroxychloriquine and they are now going to start on metroxdate (not sure of spelling) I was suffering since early twenties diagnosed at 40 so at least your daughter has had hers diagnosed at a early age good luck