Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head.
After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the antihistamines not working. Feeling like I could sleep for a hundred years, muscles aching, feeling sick, weight lose, ears cracking every time I swallow, bra absolutely killing me, the odd slight swelling of the lips and eyes.
Finally, a doctor at urgent care requested that they test my complement levels. Got a call from my GP telling me that immunology had confirmed SLE. Completely went into panic. However, on my first visit to my first rheumatologist I was told that there was no way I could have SLE. Awful bed side manner (why do some doctors have to be so rude and abrupt) I was so angry.
Luckily for me my gran paid for me to have a private consultation with the help of a local support group for auto immune illnesses. Completely different story. He advised that he didn't think it was SLE but could be HUV. The dermatologist I saw seemed to agree. Even my acupuncturist told me that my body was showing signs that my renal and lymphatic system were not working properly.
Anyway I went to see my 2nd rheumatologist on Monday who had had the good sense to order a skin biopsy as my blood work only showed a very low C3 C4 count. The first rheumatologist had written to me to say that my blood work showed no signs that I had SLE or Vasculitis!! and that I was going to be referred to Immunology because my complement levels remained very low.
The results of the biopsy showed Leukocytoclastic vasculitis. Are there various forms of this disease? As he told me that mine was quite common! Is it auto immune? He is starting me off on steroids and I am being kept under his care for the time being. Not too happy about the steroids is there anything I can do to keep my weight down?
I would really appreciate any advise or thoughts.
Many thanks xx
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Fresita
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Strangely enough we have just answered the almost identical question on face book.
Leukocytoclastic Vasculitis is not a diagnosis in itself. A Leukocyte is a white blood cell and clastic means breaking down or destruction. So Leukocytoclastic means breaking down of white blood cells as seen in a microscopic study of biopsy tissue (usually skin tissue). Leukocytoclasis occurs either on it's own as in Cutaneous Vasculitis or as part of a more wide spread disease such as Polyarteritis Nodosa. So it is essential that the doctor/consultant ensures that it is not part of a more serious and extensive Vasculitic disease. LV is a small vessel vasculitis so it can affect the kidneys and it may also be associated with medium and large vessel vasculitis. So if you have been told that you have LV and you have a variety of symptoms apart from the rash you should press your doctor/consultant for a more accurate diagnosis. Often there is Leukocytoclasis in Henoch Schonlein Purpura, for this reason it is essential that someone who has a full understanding and experience of vasculitis should be involved with diagnosis and treatment.
Yes some doctors are extremely rude, often the ones with the least knowledge are the most rude.
We do know of some very knowledgable doctors/consultants who are also extremely personable, in fact we spent last Sunday in the company of two such doctors in Preston.
Depending on where you live, Dr David Jayne at Addenbrookes Cambridge and Dr David D'Cruz St Thomas's London have combined Lupus and Vasculitis clinics. We have never met David D'Cruz but David Jayne is one of the worlds leading experts on Vasculitis as well as being an extremely nice man.
Many thanks for your reply John. I think that I may get more sense from dermatology or immunology than I have from rheumatology. That consultant seemed to dismiss it as quite common and wasn't particularly concerned!
Unfortunately, I live in Blackpool so London is a long way to travel! Do you have any contacts of any groups in my area any consultants nearer to my area?
Blackpool, that's good. There are two excellent vasculitis doctors at Preston Royal, who are also very personable. They are both kidney men, but they know all about vasculitis. I have sent their names by private message.
I have just received a letter from my consultant this morning to my GP. He tells the GP that I have Hypocomplementemic Uricarial Vasculitis.
He has started me off on 20mg of Prdnisolone (5 days ago) but I feel worse. Is this normal with steroids? I keep getting hot flushes in the afternoon, my pulse feels like it's thumping, I feel shaky and my stomach is a bit queasy. I have had to start working from home because I reached breaking point.
Is there any info out there on this particular type of vasculitis?
Hi, John here. I'm embarrassed to say that I know very little about HUV, its diagnosis and treatment. But I do know a couple of men who do know, so give me a couple of days and I'll get back to you.
Firstly, try not to worry about the steroids and weight gain, we are all different but I have been on predisolone for 7 months and was having steroid injections prior to that and have actually lost weight. I never gained an increased appetite as so many people do and so in that sense I suppose have been lucky.
I have curtaneous vasculitis caused by sjogrens syndrome and am lucky enough to see David D'Cruz at St Thomas's who John mentioned in his message. It took a long time to reach that diagnosis and I have been given dfferent diagnosis's along the way including HSP and SLE.
Once you start on the right medication things do start to improve, as you are finding it just takes a while.
Hi, Unfortunately you may have to get used to being mucked about with an LV diagnosis. I had a positive biopsy in June 2009 taken by a Professor of Dermatology and before he took it, he said I can tell you, you definitely have vasculitis, but I still have to do a biopsy. He was asked to do the biopsy by the Immunology unit I was under the care of.
Like you I was relieved in some ways just to get a proper diagnosis. Since then no doctor I see agrees with the diagnosis! I keep being told my bloods dont show vasculitis, dermatology went bonkers when I told them a consultant had said that to me, they said ''if you could tell you had vasculitis from blood tests we wouldnt have to do a biopsy''. I hold on to that whenever I see Rhuematology who treat me like some sort of time wasting hypochondriac!
They cant find anything systemic in my blood so they dont see anything wrong, despite my blood showing C3/C4 issues and I have had raised CRP for 6 years, and Im on a bucket load of meds that will mask some stuff. Immunology who deal with the majority of my care are more considerate and they help to deal with my various urticarias and angioedema. If it helps I currently take 360mg Fexofenadine, 2000mg Tranexamic acid, Cyproheptadine because its an antihistamine that works as a migraine preventer and Dapsone 100mg. The addition of the Dapsone is the only thing that got on top of most of the wheals I had.
I have all the same symptoms as you, but I dont get weight loss, Ive actually put weight on. I have chronic fatigue but cant get anyone to take that seriously. If your bra hurts you may have a combination like me which includes delayed pressure urticaria. My feet are a nightmare, I havent worn a proper pair of shoes for over 5 years. Until I found a pair of extra wide trainers that didnt press anywhere on my feet, I had been known to have to go to work in the snow in flip flops
I would agree with John and Susan. Go and see David Jayne if you can, I wish I had instead of going to my Rheumatology unit. They just cause me depression and anger like some of the folk you have seen. Love Immunology consultant, hate Rheumatology consultant with a passion!
Thanks for the replies. I find it absolutely amazing that I have picked up more on this site than from any consultant. At least I am forewarned that it's not likely to be an easy road.
I have finally started on the steroids but had horrible dragging pains in my legs last night and my rash has got worse again. Unlike most people my urticaria is concentrated on my hands and arms and not my legs.
Anyway going to give the steroids chance and keep smiling
Sound like you have been 'throw in' at the deep end! I too had rash for years, that everyone(including me) thought was 'allergy related'. I don't know of any alternative to steriods, off hand; depends on the dossage, you are on. Do let me (us) know how you 'get on'.
Thank you so much for your last comments. I have had one wheal on my leg in 7 years and all of mine are mainly on my arms and hands, main area for me is inside my arms and my thimbs for soem reason. Thats why I get so many problems getting consultants to believe my diagnosis because everyone else they see with vasculitis has it on their shin area. They dont think, despite my biopsy that they are 'proper' vasculitis wheals!
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xx
Just Diagnosed with Systemic Vasculitis
Recently diagnosed with ANCA Vasculitis.
Recently Diagnosed with CNS Vasculitis 
Newly diagnosed GPA without renal involvement. Sorry it’s long. 
Is there always a rash with vasculitis? 
