Causation of vasculitis.

[Albasain]

What research is being done as to the causation of vasculitis in its various forms. Possible outside agents such as viruses triggering an auto-immune response and of vectors such as insects? Environmental and lifestyle factors attributing in this?

[hamble99b Volunteer]

I was bitten by a deer tic on a trip to Denmark. My r.a. which had been in remission, had a huge flare; many different symptoms emerged until 2 years later dx'd with WG/GPA. 3 students at Univ. of Copenhagen were doing research prior to this into links between deer tics and more auto-immune disorders than just lymes, but I've never seen the conclusions.

[StevenHolt]

My wife was diagnosed with CNS vasculitis in 2012 after having 8+ strokes. At the time we both where cannabis smokers and the diagnosis was that it was the cause (Cannabis induced vasculitis). Over the next few months this was changed to a Drug induced vasculitis and now its just says CNS vasculitis. We had both smoked cannabis for about 12-15 years and i had no idea it could make you ill like that. She had also been taking Citalopram for 12 months before the strokes but we put this down to problems at work, although i now think this could have been the start of the vasculitus

[notsossweets in reply to StevenHolt]

I had to look up CNS vasculitis. Thank goodness she has you and your support. It's coincidental that you mention Cannabis. A new article on the adverse effects of Cannabis on the skin was posted to the Sweet's Syndrome site. While your wife probably doesn't have any symptoms on her skin, you still may find this article interesting. I have urticarial vasculitis, so the skin is it's primary affected area. sweetssyndrome.wordpress.co...

[PMRpro]

It is difficult to look at triggers until you can identify a mechanism that causes the problem - it is far too complex to isolate individual possibilities from the multitude of options.

Neutrophils, a type of white blood cell, the "first responder" in acute inflammatory situations and recently shown to be closely associated with giant cell and Takayasu's arteritis can be triggered by environmental agents, bacterial infections and some cancers. To my knowledge though they have not yet been able to identify a bacterial or viral trigger that is present in all, or even a majority of, cases of artertitis (that doesn't mean there isn't one of course - it could be a virus that hasn't been identified yet!). It is fairly well accepted that there ARE triggers that affect some people more than others - probably because of a genetic reasons, some people have the gene or genes, others don't. But in that case you have to identify a gene or gene alteration that most people who have the illness have. It will happen one day.

[notsossweets]

I agree with PMRpro. It's still too "new" of a research area. It's just too complex and too numerous possibilities. My urticarial vasculitis started in 2011 at 36. Less than 3 months before the itching and other "known" symptoms started, I fainted and went into spontaneous atrial fibrillation, which could have been a trigger. I had my thyroid removed when I was 30 due to multiple, large nodules. That could have been a trigger with the disease possibly being slow to develop. However, I had a brief bout of urticaria when I was a teenager. Typically, if you've had urticaria once, you get it again. I too was checked for Lyme given the rural area where I grew up in Texas. But, I was checked for a lot of other things too.

That being said, for some reason I really, really want to identify my cause. (Don't we all?) I think for peace of mind or something. I naively think that if the cause is discovered, I can somehow work to reverse the disease. Naive and silly, I know.

[hamlet]

I was swimming off the coast of Fiji, my shin caught on dead coral so I was bleeding when I got out of the sea. A few months later I was diagnosed with Vasculitis. The pain has not subsided since, although I am on a pain management regime. Initially it was though to be DVT as my leg had swollen to almost twice its size, a biopsy corrected the thoughts on the problem.

[Hidden]

A decent sized recent UK based study showed 'two of the primary types of vasculitis associated with anti-neutrophil cytoplasmic antibodies (ANCA) -- granulomatosis with polyangiitis and microscopic polyangiitis -- have a strong genetic component, although there are differences between the two in specific genetic variants'.

On-going research at Addenbrookes suggests that the major vasculitides occurs through genetic predisposition with an environmental, biological or biomedical trigger. Some specific triggers do appear to be strong candidates for triggering GWP including a drug used for respiratory conditions but as yet, nothing conclusive has been published. It has been reported that a suite of genes appears to be involved which will of course make gene therapy treatments even more difficult to resolve.

I'm not aware of any lifestyle triggers that have been suggested to be a possible cause and peer reviewed literature suggests cannabis induced strokes and vasculitis may well be rare.

I'm sad to say we're probably a long way from a 'cure' and our best hope at the moment is from the investment in early diagnosis, efficient biomedical indicators and less toxic treatments.

Healthy wishes.

[kath12341]

I was diagnosed with a form of vasculutis aged 5 and was given 50% chance of survival I had just recovered from chicken pox then had swollen ankles and then bled into eyes kidneys and ended up looking like i gad gone ten rounds in a boxing rings now some XXXXXXXXXXXXnumber of years later I have wg

[magician]

Very interesting discussion.

Am i right in thinking that urticaria are those large welts (like mosquito bites )? Are all urticaria a form of vasculitis? Am asking because my mom had bouts of urticaria when she was young and I have BD. Wondering if there is a genetic link.

[Shezian in reply to magician]

I had Botox and filler injections in the face 3 years ago and have never felt the same. Even though l am positive p-anca (neg MPO), l seem to think I may some form of vasculitus as a result of these injections. The doctors don't seem to think l have vasculitus, so don't know what to think. I just wish l could turn back time and never have had those injections. Not enough research has been done on the massive side effects these procedures can have, especially in immune comprised individuals.

[Daisie4654]

I can relate to the viruses as of being caused by insect bites. I had counted more then 64 Chigard bites on just one leg mid Sept and by October I ended up with nerve damage and vasculitis. I am building my immune system as the treatments they suggest all break it down. Since the nerve trama did so much damage to circulation to the one toe I am trying to save it. Which means not taking all my red/white/platelets suppressed and I am allergic to like every medication they give me. I have read the book "The Code of Life" so doing what it says in there. I wish us all a lot of luck. This is my second time around, but it's been soooo many years ago. Let me know how it goes!

[hamble99b Volunteer in reply to Daisie4654]

every one is different, but, I know that I'd gotten so ill, had I not been put on immuno-suppressants, it's unlikely I'd still be here 20+ years later.

[Hidden]

I was recently upset by an 'off the cuff' remark during a probing conversation about my ' illness'. The person I was talking to implied that vasculitis was self induced and that she'd known other drug addicts and alcoholics who'd got it. I am neither and my symptoms started during my 2nd pregnancy but was not linked to vasculitis until I was diagnosed a year later. I have also been asked if what I have is like AIDS or if it's due to bad genes. There seems to be a lot of pseudo experts out there and also a lot of guessing. Isn't it like asking what causes cancer? Sometimes lifestyle choices play a part and sometimes it's the luck of the draw...

[PatriciaAnn in reply to Hidden]

How upsetting for you. What an ignorant know-all (is it possible to be both?) It is know that one of the rarer vasculitis diseases is mainly found in smokers. It is known that in another rare vasculitis some prescription drugs and illnesses can trigger the illness.

AIDs is an AQUIRED disease, vasculitis ISN'T. They are nothing like each other apart from the fact that they affect the immune system - but in completely different ways..

My but she does know a lot doesn't she. Probably knows more vasculitis patients than we do. Reminds me of the chap who spoke two languages, English and Rubbish.

Maybe you should get one of our Understanding Vasculitis Leaflets and send it to her for her birthday.

Hope that raised a smile. PatriciaAnn

[Hidden in reply to PatriciaAnn]

It is possible to be an ignorant know all, I've met a few of them and they all talk 2 languages...rubbish being their first! Thank you, smile achieved!

[undertherug in reply to Hidden]

Hello,

Yes, I agree, the statement it's drug induced, etc a misunderstanding of the various kinds of Vasculitis. I have CNS Vasculitis & Systemic Vasculitis. I've had it, now they are guessing since I was 25 years old. After a long battle with Viral Meningitis.

I've been treated horribly by doctors. The reason i know, I've had great doctors! Some of the doctors need therapy. I'm not joking.

I'm now 57 years old. I'd been treated as a psych patient all these years. It was literally all in my head. Diagnosis in October of 2016. A long time, to do some damage. ( My Brain ). The CT SCAN at an ER spotted it. I could be very angry, but I'm not. I'm grateful for your site. My concern is, people are walking around with Fibromyalgia diagnosis's and they have a form of Vasculitis. I'm being treated with steroid IV infusions, followed by, 1 IV infusion of Rituxan, once a week for a month. The first round put me in remission for 6 months. I've since repeated the same protocol and now waiting to see if I'm in remission. I'm using high doses of CBD oil with small amounts of THC. This has helped my cognition immensely. Also side effects from the Tacrolilimus I'm taking.

[AllyGY2013]

I had a chest infection that wouldn't clear even having had numerous courses of antibiotics.

I turned to the internet to try to find outside inflences that might not be helping me and came across articles on flame retardants and moulds in damp buildings and much more, it was fascinating reading.

My breathing has improved dramatically since I got rid of my memory foam mattress. I read up and saw worrying concerns coming from America about the fire retardants used on such items, particularly foam products. Needing a new mattress we decided to purchase a spring mattress and within a very short time my breathing improved.

My husband has found concerns that are coming from Australia about soap powders, these are often not fully rinsed out with the modern economy washing machines (designed to use less water) and then stay in our clothing and get absorbed through our skin. It can be shocking when you take an item which has been washed and dried and place it in a clean bowl of water, the water can go white with the washing residues in it and these products can contain some pretty strong chemicals. I'm changing to a more environmentally friendly alternative, as much for my children as for us. I just wish I'd thought of the health and envionmental implications a bit sooner, but better late than never!

Ally

[hamble99b Volunteer in reply to AllyGY2013]

I use wash balls I bought from qvc. they have no soap at all.

My Mum bought some when Dad had reactions to all automatic washing powder and they were great.

We live near the qvc outlet shop. they had a huge clearance sale and each one was 25p! Mum bought the lot and I still have some, inc those I inherited, 10 years later! they each do 30 -40+ washes.

[Suzym2u Moderator Vasculitis UK]

These are the results from a poll VUK did a while back. healthunlocked.com/vasculit...

[optimist-ok]

I was diagnosed with PMR/GCA in Nov 2011. I don't know whether these 2 things happened too far back to affect this. In 2006 I broke my shoulder tripping off a board walk and in 2008 my Achilles tendon ruptured whilst playing badminton!