First of all I would like to say what a fantastic site. I have found all comments extremely helpful and it puts in to perspective how serious this disease can be
My story
I was released from hospital 3 weeks ago with pneumonia, blood in the lungs and "possible vasculitis" I was in for a total of 6 days, 3 of which were in quarantine as they thought I may of had TB. Whilst in hospital in underwent many tests ,bronchoscopy, CT scans Chest x-rays ultrasounds e.t.c. The consultants throughout my stay were convinced that I showed all the signs of vasculitis and kept on mentioning this to me but without much explanation, they mentioned it that often I was convinced that it was an extremely common disease and one which would be easily sorted. After 6 days in hospital and several blood transfusions I finally started to feel on the mend so I asked the doctors what the plan was as I felt a lot better than had done on admission (fully expecting to go home). He then went into a lot of detail on how I was going to be in for the next 1-2 weeks whilst they treated me with steroids for the vasculitis, but no joke of a lie another consultant whilst the other consultant was stood there popped her head around the curtain and said do you want to go home?? At this stage I was totally confused but being a 30 year old male jumped at the chance to get out of hospital. It has now been 4 weeks since I have left hospital (I had antibiotics for the first week but no medication since). On release they said I may have to come back for kidney Biopsy. This was confirmed after 2 weeks and I'm awaiting the date for this. Since then I have had 3 more visits to my GP and 2 visits to hospital my symptoms are getting as bad as they were when I first went in.
Fatigue
Coughing up blood
Flu like symptoms
Night sweats
Headache
Breathlessness
( I did visit the GP with all these symptoms 3 times spanning 3 months before being admitted).
After a lot of research over the past couple of days I'm now getting the distinct feeling that the people treating me don't fully understand this condition. ( I certainly don't)
I'm looking to get as much information as possible from people on what questions should I be asking? what tests should I be pushing for? should I look at going to another hospital for treatment ( currently under the care of Bradford teaching hospital) any help would be greatly appreciated
It is extremely frustrating as one minute I feel ok and the next I cannot get out of bed and its really starting to affect all aspects of my life especially family life.
Written by
Ianhend
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I suspect your gut instinct about the Dr's you have seen not fully understanding Vasculitis is right. If they suspected Vasculitis ( especially with pulmonary haemorrhages so severe that you needed transfusions ) then you should have started treatment by now. Your body is compensating due to your age but can't keep that up forever.
VUK have a helpline, if you phone or e mail for advice we can talk you through the process of getting a second opinion. Vasculitis is a rare, complex disease. Diagnosis depends on recognising the symptoms and then having the experience to feel comfortable making the diagnosis and initiating treatment.
Totally agree with what Keys has said, the sooner you get Vasculitis diagnosed and treatment started the better. Your consultants should have realised this had they done a little bit of research. Unfortunately this is often par for the course with a rare autoimmune disease like Vasculitis and getting referred to a consultant with the appropriate expertise can be difficult. Usually by that time you will have already had to convince your GP there really is something wrong before you get the initial referral. I am certain the helpline will advise the best hospitals in your area. In my case when I did finally get to see someone with Vasculitis expertise I was instructed to go home from my morning appointment, collect some clothes and present at the Renal Ward in the afternoon. I had a Kidney biopsy the following morning and started treatment in the afternoon.
It sounds like you may have GPA (previously called Wegeners) Vasculitis. Have your bloods been tested for the ANCA antibody? That is usually present in this type of Vasculitis. You can find out more about GPA on the Vasculitis UK website.
Hello. It sounds like you are having a rough time at the moment. Your symptoms are far worse than mine, so I cannot comment on that side of things. But I did just want to say that, I was diagnosed with a form of Lupus (chronic auto-immune condition) in November 2013 and at almost every one of my Rheumatology appointments my Consultant mentions that I might possibly have slight Vasculitis. She never documents this and I get copies of all of her letters to my GP and other doctors so can see for myself. So when I mention it to other doctors they just look at me like I am mad or a hypochondriac! But luckily for me I have found a great Dermatologist and he has started me on a complete immune suppressant that will treat my Lupus, and it also used to treat Vasculitis - so hopefully will keep any of those symptoms under control. I get the impression, like you, that my Rheumatologist does not have the courage of her convictions and I may never get a formal diagnosis of Vasculitis. Some of the symptoms of Vascilitis and Lupus can be the same. Plus I have osteoarthritis, a syrinx cyst on my spinal cord, allergies, varicose veins etc. So a very mixed bunch of problems. Anyway, I wish you well and would say, that suffering from these rare complex conditions, you do have to be very pro-active in your one care and do lots of research to make sure you understand and have knowledge of your condition. Best wishes.
Hi Wendy, I just wondered what immune suppressant you were put on as I have lots of symptoms and they say I may have lupus,/ vasculitis, but they r not sure. Thanks suzy
I was diagnosed with a form of Lupus in November 2013 (SCLE - Subacute Cutaneous Lupus Erythematosus) and started Hydroxychloroquine then. I was taking 2 x 200mg a day. I had had positive blood tests (ANA, ENA, Anti-RO, from memory) and that with my symptoms lead to my diagnosis. With the benefit of hindsight I think I had actually had symptoms since around 2008. And further back again, warning signs were there from an early age with me.
I was on this medication alone until July this year, so 2 years 8 months. My flares and symptoms were getting closer and more difficult to deal with. I had a punch hole biopsy on the rash on the nape of my neck in January and the results showed that it was lupus and still active. So, all these things combined led to me having a course of steroids and finally I was put on an immune suppressant. I am on Mycophenalate Mofetil (MMF) and have increased over an 8 week period from 1g per day to the maximum dosage of 3g per day. I still take the hydroxy as well.
The average lupus diagnosis takes 7 years, I have read. It is not easy to get a diagnosis and some people are on medication before they get a firm diagnosis. Some people are give the diagnosis of Undifferentiated Connective Tissue Disorder UCTD.
Lupus UK have a wonderfully helpful and supportive site here. It's be my rock throughout my Lupus journey. Take a look.
If you want to ask more questions, please feel free and I will do my best to help. Or PM me.
Hi Wendy, thank u so much for ur lengthy mail, it is really informative. I have a positive ana, but a negative ena, but lots of other symptoms and pain. I am just struggling wiv the doc referring me places as he thinks I'm just complaining bout nothing and its also difficult to find the right specialist. I really appreciate ur reply. I hate the steroids as I've only taken them once and the pressure in my eyes goes really high. I have scleritis and ocular hypertension in both eyes. Thanks again and u wish u well wiv ur health. Suzy
I would fully suppport that you phone the Vasculitis UK Helpline 0300 365 0075 as soon as possible.
It is clear from all I've read that because it is rare and can present with a huge range of symptons (or none at all) which can legitmately be diagnosed as some other more common illness, few doctors understand it or have experience of it.
You may have to travel to get a second opinion, but once you have seen a vasculitis specialist and they confirm (or even just suspect) the condition you will start appropriate treatment immediately.
Thank you all for the responses. I would just like to say I contacted Lynn on the helpline last night and after 12 hours we already have the wheels in motion for me to see a specialist who is just 30 miles down the road. I cannot thank her enough and hopefully I can get to the bottom of this soon
I am very sorry to hear of your possible Vasculitis
You are very right to be concerned and without stressing yourself out too much you need to get as informed as you can cope with about this disease
There is a lot of new research about the immune system and genetics that are throwing new light on this disease
It is an autoimmune disease as you probably know already
I have a good friend who 13 years ago was diagnosed and he has been through a lot
But there are excellent support groups and I can appreciate you must need support
I have been diabetic for 14 years had colon cancer and major surgery last year and now may have Giant Cell Arteritis which is another disease like Vasculitis but my immune system may be attacking my upper arteries
I've been put on 40 mg a day Prednisolone which has side effects but if you have a disease in the Vasculitis family it is still one of the most effective treatments to prevent damage to your body ...a sort of lesser of two evils
You are right to be concerned it is a very serious disease and the more you know about it the better you will be able to manage it
My friend had a kidney biopsy and said it wasn't too bad but everyone is different
Good luck and now is your time to be selfish and take good care of yourself
I having been seeing specialists for over a year. It started building slowly resulting in cardiac & lung effusion that was last summer. I use prednisone & NSAIDs. I continue to have:
Was in hospital in June & no real diagnosis. Specialists keep saying auto immune (vasculitis &/or lupus).
Anyway patience are needed & after so many tests I have gave up on a quick diagnosis. Try to relax & have faith in your doctors. Otherwise you can stress yourself &'that is not good either.
I think that faith in Dr's has to be earned, Ian's Dr's have done nothing to earn that faith. As he states he hasn't commenced any form of treatment despite symptoms that could potentially lead to end organ failure. If specialists feel unable to make a diagnosis then they should seek advice from someone who is willing.
I am glad your approach is working for you but it is potentially disastrous for someone with Ian's symptoms, especially pulmonary haemorrhage.
Sound similar to the hell I went through in 2006. One important measure as to whether you have vasculitis is a simply blood test where the eosinophil count in the blood can be counted. Eosinophil increases when there is imflammation in the body and for normal people once the infection has gone the eosinophil in the blood goes back to normal. With vasculitis autoimmune diseases, the eosinophil in the blood has no switch off and looks infection and inflammation even if not present hence why undiagnosed patients develop weird symptoms and feel so unfeel. I had two years of chest infections and pneumonia then I developed adult asthma. When i was admitted to hospital as an emergency my eosinophil count was so elevated the vasculitis had already damaged my lungs. Doctors generally have little knowledge of vasculitis and spend so long scratching their heads. You need to go to a specialist hospital such as the Royal Brompton in London who know how to deal with vasculitis. Don't accept what a local doctor says and if in doubt get a second or third opinion. It's you health.
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