So my daughter has had some bloods taken to get a diagnosis of HUV or lupus they had been looking to see if it may even be EDS syndrome. We have had some more bloods back today. I would be hugely great full for some feedback. I’ve been doing lots of research, but it’s all a lot to take in. I’m going to contact her consultant as well.
Thank you x
You'd find far more informed people about lupus and EDS over on the LupusUK forum
Thank you I shall post on there too. The HUVS is vasculitis just curious if they are thinking she has this and lupus?
It is possible - but I imagine they do a range of tests in rheumatology and see what comes up - some of the tests are rule in/rule out but the overall picture or patterns they obtain is also very important. Some things are found alongside each other and some overlap. That why it can take ages to get a diagnosis when things aren't clear.
Thank you 😊 It’s been an ongoing issue for so long now but think we are finally getting somewhere. The hospital she is under is amazing. 🤞
It is possible to have cross overs
Hi Sarah
I’m sorry I can’t advise on your daughter’s test results as such but my vasculitis is secondary to lupus and also Sjögren’s syndrome which is in the same group of auto immune diseases as lupus. I also have EDS ,(hypermobility type ) which can often be associated with auto immune diseases but why isn’t always clear.
I used to be under the care of the Lupus/vasculitis clinic at Guys/St Thomas‘, Professor D’Cruz and his team really are excellent. I really do hope your daughter gets some answers and treatment soon, I know it can be a long road x
Dear Sarah,
I can't 'Help' you directly, you have 'Come Through' to A Bit The Wrong Place. We CAN All offer you, Generalised Guidance, on Auto-Motive Disease.... but, I think you are after 'something' more Specific.
If anyone, on Here CAN Please, offer some advice, to Sarah then do so. Else, you might do 'Better' with the Lupus Forum, or perhaps- or Sister Organisation- Vasculitis UK, that has a Broader 'Base'.
I know that we ALL wish your Daughter 'Well' Sarah. Our Prayers are With, you Both.
AndrewT
Sarah , did you talk to your daughters consultant discussing her blood test results? HUV is rare and she should be seen by doctors who have experience, understanding and knowledge.
I would reccomend either the Lupus and Vasculitis multidisciplinary centre at Manchester led by Prof Ian Bruce and Dr Ben Parker. The centre is called the Kellgren Centre at the MRI.
Or Addenbrookes Hospital Lupus and Vasculitis multidisciplinary centre led by Prof David Jayne.
We do have a page on the website giving information about HUV, HUVS if it is helpful vasculitis.org.uk/about-vas...
Hi John. Thank you for your reply. We received a letter today confirming she has Hypocomplementemic Urticarial Vasculitis. She’s on Hydroxychloroquine and has been for a month + so far with little effect.
Thank you for sharing the above website was very helpful.
I’m so pleased that we have finally received a diagnosis. She’s 18 in may so a long road ahead x
Sarah I am sorry for the late reply but I have been under the weather more than usual and have not been checking posts in a timely fashion as a result.
I was diagnosed with Urticarial Vasculitis Syndrome over a year ago now. My anti c1q antibodies were very high at 136 and my complement s c3 and C4 were on the low side, but not drastically low.
I'm on hydroxychloroquine for 6 months now and am not seeing any real improvement on the drug ( but suspect my joints would be more painful without it). I am having trouble moving my eyes around in their sockets though as of the last couple of months, something my GP thinks is a side effect if the drug but which my rheumatologist has ignored. I hope to get a referral to Addenbrookes as I question if this is the right drug for me and for the type of vasculitis I have.
I don't know if your daughter has rashes- I do and the urticarial, hive type rash improved after a month of colchicine. I don't know for sure, but suspect that drug helped me. It hasn't abolished the finer rashes I still suffer from however, especially the very painful, burning one I get on the nape of my neck.
I questioned whether I have a primary or secondary form of the disease. I was told primary. I was previously diagnosed with M.E. and fibromyalgia and once tested positive for rheumatoid arthritis factors. Now that both my complement levels are just within normal and my anti C1q antibodies are also within normal range, I get the feeling my rheumatologist is trying to blame my ongoing and new symptoms (visible joints swelling and a DVT last August) on to fibromyalgia again. I agree with John Mills that going to a specialist centre is the best plan.
Going to bed now, but if you have any Q's I'll try and answer them tomorrow. Sorry I can't be more helpful right now. I wish you and your daughter good luck- and don't give up 🌺🌸
I’m so so sorry I’ve only just seen this message. I hope you are feeling better In yourself. Did you manage to to get a referral to Adenbrookes? Alisha anti c1q antibody is still the same 11 months on. She’s also had her scleroderma antibody TH/THO back as positive.
She’s now been out on mycophenolate 1500mg and hydroxychloroquine. Still suffering with the hives.
They were a little unsure if she has SLE as well as HUVS.
More appointments coming up.
Sarah
Please, please don't apologize. I'm always missing things and you have a lot to cope with right now.
Firstly, I'm so sorry your daughter is still suffering so many of the symptoms. I hope the upcoming appointments are helpful- please keep us posted if you can.
I didn't get my referral to Addenbrookes, which is an ongoing source of distress because whilst I have been lucky I'm having some symptoms improve (the rashes and frequency/severity of headaches and complement levels are better) I'm still collecting new symptoms.
My knee joints are both very swollen & painful, and last December, I started to get swelling of the subcutaneous tissue in one and then both thighs, causing more pain and difficulty walking. I told rheumatology about this in January and was due to be reviewed following x-rays, but that March review has now been put back to May.
I am wondering if I'm starting something like scleroderma, but am struggling to get help from the rheumatology department at the moment. It was my G.P. who organised the ultrasound scan which demonstrated the swelling in my thighs. The jnr Dr I saw in January said she couldn't feel it! Everyone else can.
It sounds as if your daughter needs a different drug approach, and as Addenbrookes are the best place to be, I'm sure they will get on to this.
Just a thought, but maybe check they have run other tests for antiphospholipid syndrome (sticky blood) as this can sometimes accompany lupus and vasculitis. And also keep an eye on kidney function.
I was told some rheumatologists consider HUVS to be a sero-negative form of lupus, others consider it to be a discrete disease. I think the treatment is broadly the same regardless. I don't know much about scleroderma.
Take heart- things can improve. Different people respond to different drugs and in different time scales. I'm on an antihistamine as well. That might have helped rashes. I'm also on an antiviral, acyclovir, to stop shingles.
Good luck 🍀 and sending you both a big hug 🤗 and always here to listen and share experience
I have read on some sites that the anthrax vaccination can cause vasculitis does anyone know whether this is true or not?
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