I would like to ask a question... has anyone been diagnosed with Vasculitis, during or just after pregnancy? We have just been contacted by another two ladies who have been diagnosed with Vasculitis, one during pregnacy and one a few weeks after giving birth... one with CNSV and one with WG... John is supporting them both...but I was just wondering how often this may happen...
Susan
Hello, John and Susan,
This is not the most helpful of answers, I know, but I was a midwife for 30 - 40 years before retiring five years ago and I never came across this. Either it is very rare indeed or Doctors are beginning to recognize and diagnose vasculitis more.
Do hope the ladies in question do well.
I am afraid it seems to be one of the triggers in a few ladies... we have heard of a few cases up to date, 3 ladies with CNSV.. a couple of ladies had still born babies... but the Vasculitis was not diagnosed until after the pregnancy
I think it is a combination of Doctors recognising and diagnosing Vasculitis more but also earlier.. one of these ladies was diagnosed during pregnancy and the baby is quite well but the mum now has a long road of treatment and medication ahead... the other lady is hoping to get a referral to see David Jayne...
I do not know of anyone who has developed Vasculitis during or shortly after pregnancy but I do know of two ladies who developed Lupus, a different autoimmune condition.
Lupus is very similar to Vasculitis.. there is a theory that pregnancy or giving birth could act as a trigger for a few ladies ... it is an interesting theory...
This is something I've been looking into recently as I have been diagnosed with cnsv, have no children at present but want them in the future. Having finally got the all clear from fertility tests (as we were worried the affect cyclo would've had), I have been told I can have kids (although still nervous about what this would entail) and I have found out that Dr Jayne at Addenbrookes has a specialist Pregnancy and Vasculitis clinic that they run there. It might be worth speaking with the specialist nurse there for advice?
Also in Sheri Schwar's book Sick and Tired of being Sick and Tired' she was diagnosed as having TA after giving birth to a healthy baby - but she was really poorly during pregnancy. Hope this might be of some use x
5 weeks After my first child was born I came down with a severe rash. I went to the ER three times to try to get rid of it. Finally I went to an immunologist who took a biopsy and it was vasculitis. I had previously been diagnosed with probable Lupus. Negative ANA, and positive LE prep tests. I know they don't even do LE preps anymore. This was the worst rash I have ever had. However I get rashes any time I am in the sun.
A few months after my first child was born I developed a sevre urticaria like rash
It was treated with antihistamines
I was investigated for allergies and for the next 30 years or so had episodic outbreaks but was never diagnosed with vasculitis
Some attacks were so sevre I had angiodema and breathing difficulties
Stress seemed to cause flare ups .I also was diagnosed with fibromyalgia approx 20 years after the first flare up.This resolved itself after 18 minths
Since menopause I have not had any urticaria like attacks but a few years ago was investigated for Lupus as aNA and anti dNA levels were positive
I now have presented with signs of Giant Cell Arteritis and am on steroids whilst waiting for a temporal arterial biopsy
I wonder if all this is related
40+ years ago the immune system and autoimmune diseases were poorly understood and diagnosed
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