Does anybody have preliminary vasculituis ?

[Hidden]

Or maybe someone can tell me more about this.

[lesleyg]

Hi Shirley

I just googled it, and couldn't get it to come up. There is something called Pulmonary Vasculitis. Was it something your doctor said or is it in writing?

Cheers

Lesley

[Hidden]

I have behcets , multiple clots in both lungs and aneurysms in my pulmonary artery.

It started with mouth ulcers headaches. It is pulmonary vasculituis but worse as it wasn't diagnosed for a years. I am wondering if anyone one else has this to this degree

[Stecheb in reply to Hidden]

I was diagnosed just over two months ago with Behcet's when I got pleurisy (pleural effusion), dozens of mouth and genital ulcers. All tests for infections came back negative, so clearly my immune system had simply gone on the attack. I thought I had a broken rib. Rheumatologist prescribed Prednisolone (glucocorticoid) 60 mg tapered down over three weeks to 20 mg, then another month on just 5 mg. The symptoms had greatly reduced at the end of the first three weeks and, after more tests/X-ray, I was given the all clear a few days ago. Fortunately, I did not have any problems in the pulmonary arteries as far as I understand because contrast scans done at the outset came back negative. It sounds like your condition is very serious and I hope you will respond as positively as I did to treatment. Now I just hope I don't get another flare for 20 years! Wish you well with your treatment.

[Stecheb in reply to Hidden]

I don't want to be inaccurate. What I should say is that the MRI scan showed no clot in the pulmonary arteries. But, as I understand it, the source of the pulmonary effusion is a pulmonary artery inflammation of some type. Whether that amounts to aneursym or not, I'm not clear.

[Stecheb]

I suppose I should add that having had the most wonderful clear spell for ulcers while on the steroid, within just these few days off treatment, back they come, but I had lots of trouble with ulcers for years and years without being so drastic as to really concern me, so I can put up with that. The contrast scan I mentioned was an MRI.

[Tobygosden]

Hi Shirley

I have been diagnosed with exactly the same as you with pulmonary vasculitis which includes blood clots in my lungs and a pulmonary aneurism. The main issue for me is having a lack of physical ability due to getting out of breath. I was only diagnosed last may after a CTPA (CT pulmonary angiogram) which uses contrast, I also had a PET scan. So far I'm on my third set of medications to try and sort me out which so far hasn't worked, I'm hoping the infliximab combined with methotrexate and steroids will help, but too early to tell. What medication are the doctors trying you on?

[Hidden]

My aneurism burst so I was in intensive care and have lost part of my lung function. I was put on methotrexate and infliximab every 2 months at first but developed clots in my legs so they changed this to infliximab every 2 weeks and have increased my steroids to 60ml a day. I also have clexin injections every day and I am also on 200ml a day of azathioprine as I developed more clots, which is why I was taken off methotrexate. I have been told it is trial and error as nobody has it to this extent. They are in touch with consultants in London, turkey and the Caribbean for advice as they have never come across this before. Yours also sounds similar. I have tried your combination but it didn't work for me so hopefully this will work and that will work for you!

[slappy]

I have this Bad due to fact having hughes stovin worse form behcets ie coughin up blood from lungs ;-(

I Went to bri bristol an ended up seeing doctors at london royal brompton!

I had dvt's before i knew i had bechets which may of not helped,but when i have a bad bleed i end up having higher course steriods,biotics and few pain killers as it breaks my artirerys when i bleed inside !

I did have a year of chemo too at london for illness back in 2005

regards james

[Zebra]

Vasculitis is part of Behcet's. This site and also Vasculitis UK can tell you all about it. There is a Vasculitis Routemap that includes Behcet's and BSS's website has useful factsheets too. Your specialist will be working on reducing the inflammation and that will reduce the vasculitis which simply means inflammation of the blood vessels.

[Hidden]

Thank you. On 2nd lot of meds at the moment so hopefully these will work

[Jamieevs1988 in reply to Hidden]

Sounds exactly the same as me shirley