Hello from Steph West in Ireland

[stephwest]

I was diagnosed with Wegener's Granulomatosis about 4 weeks ago due to waking up at 4am with partial sight loss in one eye, rushed to A&E by 7.30am and the local doctor recognised it by 10am and was on steroids for inflammation in joints by 5pm swelling reduced over next 2 days but developed awful hearing echoing from inside my nose and slight loss from outside, hearing specialist says will go away as steroids are reduced -- got appointments to see special eye clinic in August. Please any info on the above much needed. Many thanks Stephen

[me2]

Hi Stephen,
I'm sorry you are having such problems. If you have Wegener's I think it important that you begin a search for a WG specialist as soon as possible. Steroids will buy you some time but it is important to begin a primary treatment like Cytoxan or Rituxan or whatever your specialist determines fits your situation. Just steroids is not enough. You would never reduce steroids without being on primary treatment. Your hearing specialist may not be experienced with WG. Your hearing problem sounds more like WG to me than a steroid problem and his thinking is dangerous if he does not understand WG.
I did a little googleing and found some local resources for you . I hope you stay here too and let us know how you are doing.

I found this: Vasculitis Ireland Awareness – Granulomatosis with Polyangiitis (GPA/Wegener

On that site I found this:List of Consultants who support the group

Dr A. Bell, Rheumatology Department, Musgrave Park Hospital, Stockman’s Lane, Belfast
Dr. Conleith Feigherty, Rheumatology Department, St. James Hospital, Dublin
Dr. Eamon Malloy, Rheumatology Department, St.Vincent’s Hospital, Dublin
Dr. Sean Leavey, Consultant Nephrologist, Waterford Regional Hospital, Ardkeen, Waterford.
Dr. Peter Garrett, Nephrology Department, Altnagelvin Hospital, Glenshane Road, Londonderry
List of specialist nurses in Northern Ireland who support the group

Belfast City Hospital : T: 028 9032 9241
Rheumatology Nurse Service l Jannette Sloan ext 2246
Vasculitis Clinical Nurse l Donna Winaker ext 3282/4071

Royal Victoria Hospital : T: 028 9024 0503
Rheumatology Nurse Specialist l Ann Quinn, level 6 Out Patient Ext 3440/3190/4268
Rheumatology Nurse Specialist l Caroline Mc Ateer ext 2818
Antrim Area Hospital : T: 028 9442 4000
Rheumatology Nurse Specialist l Caroline Mc Ateer ext 2818
Rheumatology Nurse Specialist l Debbie Collins ext 4224
Rheumatology Nurse Specialist l Ruth Milligan ext 4227
Musgrave Park Hospital : T: 028 9090 2000 Helpline Ward 4 ext 2829
Ulster Hospital : T: 028 9048 4511
Rheumatology Nurse Specialists l Andrea Gilles, Joyce Johnson
Rheumatology Nurse Specialist l Sheila Mc Kimm 028 9056 4742
Connective Tissue Disorders l Audrey Hamilton ext 2995
Craigavon Area Hospital : T: 028 3833 4444
Rheumatology Nurse Specialist l Elaine Wiley ext 4242

Altnagelvin Hospital : T: 028 7134 5171
Rheumatology Nurse Specialists l Janice Carlisle and Bronagh Grant ext 317
ENT Nurse Specialist l Paul Crilly ext 4818
List of Specialist Nurses in Southern Ireland who support the group

Una Martin,
CNS Rheumatology, St.Teresa’s Unit, Waterford Regional Hospital, Dunmore Road, Waterford
Donncha O’ Gradaigh,
CNS Rheumatology, St. Teresa’s Unit, Waterford Regional Hospital, Dunmore Road, Waterford

[annekat]

Welcome to the forum, Stephen. I agree with Kirk and am impressed with his work in finding that resource for you. You will find also that if you stick with this forum, it is the best place in the world for easy access to information on WG and support from those going through the same thing. Everyone's case is different, but you will learn a lot from other people's experiences. Best of luck in getting your treatment on track. You do need to be on a suitable immunosuppressant in addition to the steroids.

[stephwest]

Hi Guys My 1st attempt at thread was a bit hurried when I called the whole proscribed package steroids. From the 2nd day in hospital the team put me on Prednisolone 80mg down to 60mg after 5 days and 40mg after 10 days, Methotrexate 15mg once a week without Folic Acid), Folic Acid, Zoton, Nuasa (asprin blood thinner) and Sterimar nasal spray. Sorry to not included this info before but its a lot to take in. Many thanks for the list of WG medics in Ireland the nearest is Waterford still 200km away as I am in Limerick. I have not yet travelled outside my local area its all very tiring.

[mishb]

Hi Steph and welcome

You certainly passed all of the tests to get the induction in to the world of Wegeners and make your way to this forum.
The test is certainly a hard one, with lots of pain along the way.
But.....you are here now, and this is the best place to be - with the people who know.

Kirk has given you a fantastic start to a very long journey that is facing you.
I hope you can make a trip to one of the specialists that he has given, or, that one of your doctors can refer to one of these specialists for extra guidance.

I'm glad you are on more that the steroids. Your eye appointment - I hope that is in early August (not too far away now)

Take Care and keep of posted.

[stephwest]

Hi Michelle. Many thanks for theadvice, I have an appointment with Rheumatology consultant on Thursday see how that goes. The eye appointment is not till later in August unfortunately. The 1st eye guy used very modern digital 3d imaging and reported a burst or damaged artery in the back of the eye blocking vision from the top 1 third of right eye, have you heard of a cure or repair or self repair for this. thanks in anticipation----StephTt

[drz]

Hi Michelle. Many thanks for theadvice, I have an appointment with Rheumatology consultant on Thursday see how that goes. The eye appointment is not till later in August unfortunately. The 1st eye guy used very modern digital 3d imaging and reported a burst or damaged artery in the back of the eye blocking vision from the top 1 third of right eye, have you heard of a cure or repair or self repair for this. thanks in anticipation----StephTt

Usually they use laser treatment to heal the area. It feels like getting pricked a couple hundred times but it prevents further damage or bleeding. It does leave a blind spot in that area which you probably won't notice until you have a visual field test.

[Widthofacircle]

Hi Stephen
Brendan here from Dublin. Good to come across an Irish person here and from Kilmallock, my grandfather came from there. Sorry to hear you have been diagnosed with Wegeners. I was diagnosed in 2009 and have been attending Dr Maurice Barry(rheumatologist) in James Connolly Memorial Hospital in Blanchardstown. I initially went on Cyclophosphamide infusions coupled with prednisolone and septrim. Am now on Cellcept, 3000mg per day and 10mg pred. I also take 2 septrim 3 times per week. This dosage keeps me generally well. I have ongoing problems with hearing in my right ear and sinus problems. My initial problems started with swollen joints, flu like symptoms, rapid weight loss and kidney involvement. Lung issues followed but ok now. Have had cataracts in each eye removed. Cataracts were caused by pred. You are in for a long journey however with proper treatment you should make good progress.
Brendan

[Yvonnea]

Hi Stephen,

I too am Irish. Originally from Dublin (but living in Sweden now)....diagnosed and treated there in 2004. I first showed symptoms in my lungs and ears. Ended up being treated by a wonderful Doctor, Dr. George Mellotte in Tallaght and James hospital (He is a kidney guy but has many wg patients).
There is a new "Vasculitis Ireland Awareness" Facebook page run by a Belfast woman called Julie Power. They meet every few months all around Ireland. They may be able to direct you to a good specialist near Limerick.
Hope you get many answers and reassurance at your appointment on Thursday. Things will get better now that you have a diagnosis and getting treated.
This forum is also invaluable. Let us know how you get on...
Best wishes,
Yvonne

[stephwest]

Has anybody got awful hearing amplified echoing from inside my nose and throat (can hear breathing and eating) also slight loss of hearing from outside my head, if I lay down horizontal or even 15 degrees elevation or hold head down on knees (not even to far down say cross arms on table and lay head on them) the effect stops like a float switch in ears or back of throat blocks off a connection to the amplified echoing. If I pinch my nose and suck back has a similar effect but only till I swallow or speak. Most strange but is very very horrible. Many thanks Steph