I was diagnosed with Wegener's on lst Feb following a chest xray (symptoms coughing and breathlessness and now my ears are popping).

[Dillybean]

II have had two sessions of cyclophosphomide and steroids and am seeing my consultant in two weeks time.

My question is that I am seeing a Chest Consultant at my local hospital who has started my treatment. I believe that this is the standard treatment and so far so good. It seems to me that most people are being treated by specialists dealing with these specific diseases.

I wonder if I should be asking to be referred to another department - any comments would be appreciated. I live about 30 miles from Birmingham and wonder if there is a department there.

I am new to all of this and am feeling a bit low today - really for the first time as I have been reasonably OK but am now looking to the future, thinking things will get back to normal but knowing they probably won't.

Will be joining the West Midlands Group and am grateful for everything I have found out so far on this site.

[John_Mills Volunteer]

The Birmingham University Hospital Prof Lorraine Harper runs a Vasculitis clinic. She is very willing to work with other consultants from other smaller hospitals or you could ask your GP for a referral to Birmingham. Sorry you are feeling a bit low at the moment, this does happen especially in the early days when everyhing about WG is new and a bit scary.

There are lots of people in the Vuk/HU community who will share their experiences with you and try and help. The West Midlands group is an excellent support group to join and you wll find a lot of support there too. The Vuk AGM is in May if you would like to attend that meeting it is held in Long Eaton just of the M1 at the Novotel. Usually about 70 people attend so you will meet other people who have WG there too.

[MargaretDoreen in reply to John_Mills]

Hello Dillybean - I attend Professor Lorraine Harper's Vasculitis Clinic at the old Queen Elizabeth Hospital Birmingham on a regular basis, and have been doing so for a number of years - I was actually diagnosed fifteen years ago though not introduced to QE for a number of years, previously having been treated privately by Prof. Harper's predecessor.

The staff there are always so kind and helpful, I would follow John and Susan's recommendation to ask your GP for a referral to this hospital. The West Midlands support group is also very supportive, with meetings held once a year in October at Bromsgrove, just off the M5. If I can offer any further support please contact me, I remember how scarey it was to be first diagnosed. I hope you are now feeling less low - and am pleased that you found this site helpful.

Margaret Doreen

[jonoct2010]

Hi there,

I was diagnosed in June of last year with Wegener's, after several pointers (including a chest xray). After being referred by my GP, my initial consultant was for respiratory, who then referred me to ENT, who then referred me to my current Rheumatology consultant. He recommended 6 cyclo IV's over 12 weeks (July to Sep) and I am currently on Azathioprine & 15mg of steroids. I am content & happy with my treatment program & have regular blood monitoring (every 2 weeks).

I have found it immensly helpful speaking to other vasculits sufferers in the Vuk/HU community & there is alot common ground between us all, even though our treatment plans diversify from individual to individual.

Hoping you find the answers you want & that your road to recovery is stable!

[DevonLottie]

Hi, I was diagnosed with WG over 10 years ago now. It manifested itself in my chest and eyes and, as the chest condition was most serious, I was treated by the chest consultant (with referral to the eye unit on a regular basis). I stayed under the care of the chest unit for a number of years until a specialist in vasculitis joined the hospital (Oxford) when my chest consultant suggested I move over to his care. Although the chest consultant didn't have specialist knowledge of WG, he was not afraid to ask those who did and so I always felt the condition was well managed. I see you've been referred to other specialists too so what I would advise is that you insist only one specialist manages your medication regime or it can become very confusing for both you and the consultants. Hope you feel brighter soon - life might never be the same again but sometimes it can be better!

[kath12341]

Hi I was diagnosed on my birthday in feb 2007. The main problem i had was with my eyes which became extremly blood shot and swollen thenall sorts of randon things like burst eardrum sinus pressure. Arthritis I was initially referred to the eye clinic and rheumatoligy. I am experienceing problems again and am on steroid eye drop as well as steroids mycophenlate ect My rheumatoligist is brilliant any problems and I can ring the specialist nurse. Which I did when having breathing problems saw a specialist within 2 hrs and was in hospital undergoing test the next day. My advise is listen to your body. I have bouts of complete exhaustion when I am in tears getting ready for work. I manage by recognising when I am becoming over tored and boooking some flexi time of holiday and rest