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andrew
05-18-2008, 12:41 PM
**Patricia's story - relocated from the original site by Andrew**

I was diagnosed with "Limited Wegener's", following a tracheal biopsy, when I was 58 years old (October 2003). ["Limited" doesn't mean you have a lesser problem it's just that it's limited to one area – in my case upper respiratory]. Until a few months before diagnosis I had been very active, I had always worked in administration, and I used to dance.

Pre diagnosis

During the Spring of 2003 I developed a nasty chesty cold/cough. I had several courses of antibiotics, but things didn't improve. I was very short of breath and wheezy and my nose was bleeding and "crusting". I saw an Ear Nose and Throat specialist in early October. I was convinced I had "Late onset asthma". Following a nasal/trachea scope I was in hospital, prescribed steroids, and on oxygen to help my breathing. The early diagnosis was Subglotel Stenosis.

A week later a biopsy was carried out but was unsuccessful as the trachea was badly infected and very narrow. There was danger of collapse which necessitated the fitting of a tracheotomy tube. (This is not pleasant and I wouldn't want another, but it isn't the end of the world, and it wasn't painful.) The "trachy" stayed in situ for six months. (I wanted it out, but was frightened of what would happen when it came out. Fortunately I was OK). Finally in early December 2003 they performed a laser biopsy which was successful.

The diagnosis

The biopsy confirmed Wegener's. I went through a period of denial. I still thought I had late onset asthma and that they had it wrong, especially when they told me about the treatment. That, for me, was the most frightening thing. Chemotherapy meant cancer and I wasn't having any of that, no fear!! But, of course, it isn't cancer, and anyway denial is something lots of us go through and have to overcome.

Treatment

Initially I attended the oncology centre for infusions of Cyclophosphamide [Cytoxan] (chemotherapy) and Prednisolone (steroids). I was also prescribed Prednisolone at 60mg daily. Anti-nausea treatment was prescribed, which worked. I did, however, have very dry and thin skin, and I easily bruised. My hair went thin but, thankfully, it didn't fall out.

After three months infusions it was oral Cyclophosphamide for about a year and, of course, the Prednisolone, which has been reduced and increased over time, depending on problems encountered and on my blood tests (ANCA, ESRs, LFT etc.) After the Cyclophosphamide I started on CellCept (Mycophenolate Mofetil – 200mg (2g) daily. As of April 2007 I stopped the Pred but it was a long slow haul.

Complications

I had several hospital admissions during the first six months with various problems including ankle swelling, rashes, violent headaches, leg abscess, and suspected heart problems. Fortunately I have not been an in-patient for some time. I have developed blood pressure, silent reflux (like indigestion but without the burping), occasional rashes on my arms, legs and chest, and I've had an attack of shingles. I have a permanent cough and shortness of breath (due to damage in my trachea). I have a hole in my septum but I do not have "saddle nose". However, my nose has changed shape and is cause for concern, but it is carefully monitored. Sometimes it is difficult to decide whether the symptoms are part of the disease process or whether they are iatrogenic (caused by the treatment).

I was quite disabled for sometime and found it difficult to even move about the house. (The Wegener's has caused a loss of about 30 per cent of my lung function.) But I can now take some exercise - walking with the aid of a stick. At first this was for 5 minutes once a day, but now I can manage 30 minutes twice a day.

Diet

I gained over 2 stone (28 lbs) in weight because of the steroids. I am now eating an anti inflammatory diet – lots of fresh fruit and veg, chicken and fish etc. I buy organic so that I am not adding pesticides and additives to my body which has enough toxic stuff in it. I add organic ground Flaxseed to my yoghurt and breakfast cereal (it's high in Omega 3). I also take Omega 3 capsules. (Omega 3 is good for the immune system, so they say). This diet, combined with the reduction in Pred, has resulted in a loss of 22 lbs (and two dress sizes) since May 2006. I no longer drink spirits or white wine as these contribute to the reflux, but I do have an occasional red wine.

Friends, family and support

Life is certainly different now, and learning to adapt and accept is very hard especially after living a full and varied life pre-WG. Family and friends have been wonderful, even when I have been, shall we say, less than co-operative and bad tempered (for which I blame the Pred !!).

The current situation

It's nearly four years since I was diagnosed. I have been in remission since about April 2007. The niggling problems I had when first diagnosed have gone or are under control. Breathlessness and wheeze are now my worst symptoms, and these are worse in hot weather. I can now walk unaided, but I don't feel confident enough to go very far without my walking stick.

Doctors

My main consultant is a Rheumatologist who is excellent and who has a special interest in vasculitis and I now see him every three months. I also see the ENT surgeon regularly and occasionally the Chest Physician. I have monthly blood tests which will probably be ongoing for the rest of my life.

And finally

I have a love-hate relationship with my medication, particularly the steroids, but taking them has proved beneficial. OK, some of the tablets can have long term side effects, and the steroids make you fat, but as a friend once said "Better to be fat than dead". Take care, be happy and above all try to be positive.


Patricia August 2007

Trish
06-08-2008, 03:41 PM
Hi Patricia
Thanks for sharing your story. It is nearly a replay of my wegeners. I also find the hardest part is the shortness of breath. I am reading a book the EAT RIGHT DIET by Dr Peter D'Adamo suggested to me recently by a friend. I have started eating the suggested foods for my blood group, but it is difficult as a lot of the foods I have been eating previously are now, according to the book, to be avoided. I am not keepng stricly to it, but figure if I at least stay away from the foods that are not good for me, hopefully I might start to improve. It would be interesting to hear from other wegeners as to what their bood group is. Mine is AB (rare). According to the book AB's immune system is the best friend to nearly every virus and disease on the planet.