Vasculitis (Churg Strauss - EPGA)

Hi Matt.

I was diagnosed with Churg Strauss Syndrome and confirmed that I had Vasculitis by a biopsy of my Sinuses. 8 years ago I started really bad excruciating pain and then sickness in my gut/chest area.  I was in hospital every 2 weeks for at least 7 days out of every month for a year, this was before the CSS diagnosis.  When I got a specialist they believed I had vasculitis of the Gut, its hard to get a biopsy I was told at the right time. I have to be in a flare. I live in the UK and the process is local A&E and by the time I get to the hospital I need I have been on steriods and its cleared up.  Steriods are the only thing that has kept my gut problems at bay.  High doses.  Had this for 8 years, now I cannot tollerate steriods so have infusions every 4 weeks 500ml Mehtyl Pred, it keeps it down.  I have a number of friends with my condition and also with others that seem almost identical to yours.  It does sound like Vasculitis, it could be IBS too.  I do not know what country you are in but there are support groups in UK and USA which may be able to help you get a diagnosis and explain more.  There are lots of forms of Vasculitis. But I feel your pain its awful and yes, very scarey.  Sorry but all I was told its hard to diagnose you have to be in a flare for them to find it, unless a lot of damage has been done.  As for my bowel, well its not been diagnosed at all at the moment and I am in agony day and night.  Unlike you I don't have diarreah, never have, but most of my freinds with Vasculitis do.  I still have to wait until the end of November to have a colonoscopy.  Its a joke.  I am in pain 24/7.  I had one colonoscopy and my bowel never emptied it was done without sedation and had to stop it half way through, hence now waiting until November.  There is a group called Vasculitis UK and they have a free help line, it is extremely good and they helped me in the very beggining.  Its often manned by Nurses or people with good medical knowledge.  There is also one in USA.  Sorry I do not know what country you are in but both places will help you in whatever country you are.  They are the best source of information about vasculitis and know all the tests etc.  Please, please get help from them, I did, hence I am still here now after 8 years.  But I must admit if you have had all the tests it could well be vasculitis.  Me too with the swallowing and the pain.  Doctors diagnosed me with all sorts from esophagus cramp, gallbladder, pancretitis etc, etc, etc. None of which proved right. There are a lot of types of vasculitis dependent on symptoms, a lot have yours and mine.  Most Vasculitis is not cureable but you can be sent into remission or the symptoms managed.  Don't be scared get help.  Are you on any stomach meds?  I am, it really did help my gut.  I am on Omzoprezole 2 x daily.  Sorry about the waffle, but I feel your pain, I had one awful year of the damn thing.  I only get the gut trouble now and then, especially when they cut down the steriods.  I do hope you get help soon and if I can help further I will.  Good Luck, but don't sit there waiting contact one of the groups, they led me to specialists/hospitals that helped. 

CSS vasculitis usually comes with asthma or other lung issues correct? I have read about that particular one and it did say that it could effect your GI tract, but when it said it almost always includes asthma related symptoms I figured I didn't have CSS since I do not have asthma symptoms. You had sinus flares as well? I get sinus throbbing with stuffy noses, pulsating ears, ear popping/pain. As well as weakness/pain throughout my body and swollen fingertips. It's so frustrating I have mentioned vasculitis to several of my doctors but I feel like they don't know much about it, and say they will not order me an angiogram. Did you ever get an angiogram done? I have never been so scared in my life, because I read that vasculitis of the GI tract is very dangerous if not treated promptly in some cases. And I have had these issues going on for over 6 months now and I am getting worse. My throat has been closing up on me at times when I breathe out or talk which has got me scared. I live in the US and I contacted the vasculitis foundation. They told me about a great vasculitis Dr at UCLA and I am seeing her in 4 days. I am very excited about it, and crossing my fingers that she sees what other doctors couldn't. I am sorry that you are still having bowel issues. Hopefully they can figure out what is going on with that soon. Glad you are getting the proper treatment though, and are still around after 8 years of this horrible disease. Talking to people like you are one of the very few things that keep me sane through all of this.

Oh Matt, so very sorry.  I have been away in the country since your last reply.  Ha!Ha! Dear old England, we still have places where there is no internet access or even mobiile phone access.  So I missed this reply. 

How did you get on with the new doctor? 

In answer to your questions, firstly I know others who have no Asthma trouble at all but still have got diagnosed with CSS EPGA, mainly because of sinus and other symptoms.  There is not a definate test only meeting so many of the criteria. 

Please do not be so scared, once diagnosed hopefully things will get easier.  I am not saying it does not kill because it does.  You can also get remission in some cases, I have fellow sufferers who are in total remission.  Sadly it is none too often, but with new drugs coming out there is hope.  Its the steriods that keep a lot of us alive, but they are bad, but without them I would be dead years ago. 

I know people been diagnosed over 16 years ago and fighting strong, one even has got remission at last.  A lot depends on the doctors etc, getting the right treatment for you.  This all does sound like Vasculitis, especially CSS but I am just a sufferer with no medical knowledge.

Please let me know how you got on.  If you have CSS/EPGA there is a good Facebook site which is private, mainly USA sufferers there.  It was started up by a wonderful USA lady, she has it.  When I joined there were well under 50 people, now over 500 from around the world.  If I have a problem I post on there, if they don't know the answer, nobody does.

One thing with Vasculitis its a damn fight wherever you are, however, if you have the right insurance and doctors USA seems the very best of all.  New drugs are in the market all the time, especially one that USA is using that gives up the need for steriods. 

Stress is the worst of all for Vasculitis, believe me it is, I get stressed I get ill, really ill.  Get a rash and my body attacks itself. 

I don't know what tests I have had, I had MRI and others, lots of others years ago and now need more. 

It all does seem like Vasculitis and like other USA friends and others around the world you have to keep chasing these damn doctors.  Even though I have a diagnosis I am struggling, really struggling getting anyone to listen.  One thing about CSS and other Vasculitis conditions we can be so allergic to things, me its medication and food.  Try telling the doctors that!  The other week I had to shout my head off at a doctor, I lost it, she even called me a liar!  I said look up CSS.  She did and saidi I understand you are right but never apologised. 

Sorry for the waffle, if I read back I would never post.

Hoping that you got some good treatment and a diagnosis, because if CSS or vasculitis you need medication now.  If you have a diagnosis of probably CSS/EPGA then please join Churg Strauss Friends on Facebook, believe me, so many good USA men and women on their, they have saved my life many times, let alone my sanity.  Thank god for you USA people, I love you, so honest.