Leukocytoclastic vasculitis - is that a full diagnosis?

[pinktiger53]

As I have been learning more about the many types of vasculitis I am curious about my sons diagnosis. A few years ago he was told after biopsy etc he had 'leukocytoclastic vasculitis' probably as a reaction to his body trying to fight off strep. He needed no treatment other than elevating his legs for 5 weeks till the rash resolved and close monitoring of kidney function for 2 years which was all clear. He must take antibiotics whenever he gets a sore throat to head of future reactions and so far has had no further flares. However , I have recently been researching the condition a lot more and I am wondering if there might be a more specific diagnosis. No named type was ever mentioned that I have seen on lists like the one on the website - I understand what ' leukocytoclastic' refers to - but is it a definition of the trigger typical of one or several types or is it the type but is another name for say ' hypersensitive vasculitis'. I'm not sure if I'm explaining the question too well. Is leuko a characteristic of a named type or is it the type. Is leuko the same or connected to ANCA? Phew!

[anthony01]

Hi Pink Tiger

my firsts bloods showed signs of Lupus but that doctor said don't worry about it, she retired and saw another doctor about 3 years latter who did the biopsy himself and came up with Leukocytoclastic Vasculitis, I was then at Atkinson Morley who thought there may be a condition attached to my degenerative Spinal problem and sent me to Rheumatology who did a Biopsy and then it was P-anca. So I am not sure if this is a common link?

[pinktiger53 in reply to anthony01]

Do you mind me asking what the spinal problem is - anykolosing spondylosis ? Was the biopsy from your spine?

[anthony01 in reply to pinktiger53]

They have ever only really come up with Spondylosis which I have now had two operation on the cervical spine, one was fusion C3/4 & C5/C6 and the last was to remove growing bone on C5/6 and C6/7.

[pinktiger53 in reply to anthony01]

I was wondering because I only recently learned more about AS when it affected someone close to me and didn't realize it is far more serious a condition than people realize - affecting more than the spine ( as if that isn't enough!). To be honest the same goes for many ' arthirits' conditions. I am having a job getting my head round it all but from what I've seen arthiritis / vasculitis are mentioned a lot together. The auto immune response sure messes us up! My son learned his vasculitis was likely a lot to his auto immune response to strep - then we found out his girlfriends AS was possibly triggered by something similar. The nurse practitioner I recently referred me as she has lupus which was discovered when she developed vasculitis suddenly.

[sus29]

I have a possible diagnosis of leukocytoclastic vasculitis diagnosis myself (differing opinions - one rheum says lupus and vasculitis, another says neither!) but my son had a form of vasculitis when he was 5 called henloch schonlein purpura - triggered by a strep infection. Not sure if that has been mentioned for your son, but from what I gather that is one of the more benign forms of vasculitis. The reason I wondered if it could be similar is that we were also told to watch his kidney function.

[pinktiger53 in reply to sus29]

Thanks- I understand from what I have been reading that this is a possible candidate - but no it wasn't mentioned to him - nothing else was. He was 19 at the time but had battled strep since 3 when he developed guttate and later,plaque psoriasis as a result. Your story is interesting because I am currently awaiting diagnosis and if have got vasculitis then HSP is one of a few possible for me too. It is often less severe for children especially if they get no kidney problem. I believe it is often much more troublesome for adults. The nurse practitioner who referred me to the specialist has lupus and has had vasculitis flares twice.

[AndrewT]

Dear pinktiger(hey great name),

To be brutally honest I don't have a clue, regarding your original question-sorry. I do however know all about kidney problems- I was on dialysis for four years, I had a kidney transplant, last July. My gut feeling is that if 'they' were worried, about your son, then he would be re-called faster than the speed of light! Which hospital are you under? (the last person that I asked that to was in the USA!) I am under Addenbrooke's which is incredible, no really.

Sorry not to be much help but please do keep 'in touch'.

Very best wishes, to you both

AndrewT

[John_Mills Volunteer]

LCV is really the laboratory verdict from examination of skin biopsy tissue. It is regularly reported in various types of systemic vasculitis and other diseases. The LCV rash can be a stand-alone problem - in which case it is most commonly a hyper-sensitivity vasculitis - often due to drugs (eg antibiotics, non-steroidal anti inflammatories) According to some authorities it is not the same as HSP vasculitis - but a fine distinction! HSP is most common in under 10s, and only rarely in adults. Kidney involvement is an important feature and something to be tested for.

HSP does relapse. It can be more serious in adults.

Does this help- or am I just adding to the confusion?

[pinktiger53 in reply to John_Mills]

No John that helps a lot! Thankyou! Lol! It's along the line of what I was thinking not sure I got it clear. The specialist told us my son may never have another flare but was to take the precautionary antibiotics with every sore throat. It's great he had no internal damage from the attack as at the time the specialist was very very stern with him about keeping his legs elevated for the duration of the attack and said there was risk of damage to any system- and tho recovered without such this time he again was extremely emphatic to never get casual about the sore throat / antibiotic thing. So it was clear he believed there was a risk of future issues tho so far fine. He told him to get on with his life and not worry unduly but to always act quickly. So it was put over as very serious potentially tho hopefully never happen which was a bit of an enigma. My son is very optimistic person - tho he has taken the advice seriously and followed it. I just became curious when researching my own situation as no other condition name was ever mentioned.

[pinktiger53]

Thanks Andrew T- sorry you've had such serious damage - My son's kidney function was fine for the two years he was being checked and he was told of things to look for in case internal stuff happened without a skin flare - he's been ok and is now in Uni in another part of the country and does not see a specialist currently tho his GP Is aware of the diagnosis and possible implications.The specialist was nt worried about him going off to uni - just told him to look after his general health and to get antibiotics immediately if he got a sore throat and get a throat swab but not wait for results before taking as a flare could do serious kidney damage before a swab has time to culture!! He has always got the antibiotics and no swab has been positive for strep so far and no rash has reappeared so far. 'm just wondering out of curiosity really as well as wondering how likely another flare is for him so was looking at if a more specific diagnosis was possible. To me ' leuko ' is more describing the trigger than the type (such as HSP.). I'm the sort of person who hates gaps in info- I like to find all the jigsaw pieces I can to build a picture- and now there is a chance I may have vasculitis too and am and wondering which type I may have it set me thinking about my son and wondered if he may have any particular type. It's like he's carrying round this little time bomb which may never go off but if it does the implications could range from benign to life threatening. He just gets on with it all !! It's me that's reading and analysing everything and there is more info now than in 2010 when he was diagnosed and I am getting better at finding it!! Lol!!

[Hidden]

Hi pinktiger53,

Did they check his immune system to find out why he has repeated strep infection? Just a thought!

[pinktiger53]

Well they did lots of bloods at time of vasculitis - and after five sore throats after that specialist was going for getting tonsils out if had one again - two years ago and no more sore throats - weird. When young they had just got to point of going to admit him to children's hospital next time mystery illness flared ( they also took some bloods ) to test and observe but he never had another of those. He jokes it's fear of hospital procedures that scares him into being well!