New from France

[ziggy]

Two years ago I didn't know what was the matter with me, I was tired all the time, had no iron in my blood, had joint pains in difference places every few days. Went into my doctors surgery one day and she phoned a specialist straight away and got an appointment in 2 days time. During those two days my eye became swollen and then my eye, as though I had been in a boxing match. The specialist took one look at me and said she wanted me in hospital for tests. Two days later I saw an ENT specialist, had blood tests and MRI scan and a week later was told it was Wegeners. Treatment of a small dose of chemo, then predisinone, imurel, batrim, calcium, rosuvastatine and aspirin followed. I have regular six week blood tests and see my specialist every 3 months. I feel lucky to be living in France now having come from England 4 years ago. Very few doctors in England seem to have heard of Wegeners and I always carry a printout from the internet about the disease.

I feel fine now only having one problem. I was also diagnised with colitis about 5 years ago and I think Wegeners or the pills are aggravating it. 4 times over the last three years I have been doubled up with pain and sickness for about 6 - 10 hours. Twice I have been admitted to Emergency but they found nothing and the pain gradually subsided. Has anyone had this problem?

Does anyone know how we get Wegeners. I used to think I was ultra fit never taking a pill until 2008 at the age of 61.

[elephant]

Hi Ziggy, welcome and glad you told your story. I know Wegeners can attack the intestines ( but rare) ....I too suffered abdominal pain about ten years ago...tons of tests and could not find a thing. The docs began to think I was a hypochondriac. Anyways it could be a combo possible wegeners disaease and the medicines that you take. Two years ago when I was on high dose of everything, I has terrible abdominal pain, the docs kept telling me it was the prednisone and calcium...ect....they said they would run a bunch of test if it didn't subside soon. It took about 6 months before it calmed down.

[Sangye]

Hi Ziggy, welcome to the group. I'm sorry you couldn't find good docs in England-- there are several famous Wegs specialists there! Glad you've got good care in France. Are you still on pred and aspirin? If you're on pred you should be on an acid-blocker to protect your stomach. Regular aspirin is not a good idea--too hard on the gut.

[Geoff]

Bonjour Ziggy, Sava? A good friend of mine retired to France several years ago and was simply amazed by the high standard of medical care available coupled with the speedy attention. I hope you are getting stabalised and attuned to your body and the variety of syptoms that may come your way. Welcome to our big extended family.

[gutless]

Hi Ziggy, I also have Ulcerative Colitis and was diagnosed with Wegener's about 1 yr ago. I was diagnosed with colitis many years ago and had surgery to remove my bowel in 1993. I find Cellcept and Myfortic are very hard on me - I can't take a full dose as I spend the day in the bathroom.

[Jack]

I believe that France spend more on health care than any other European country whereas the UK is around the average so I would imagine that they have a system with more resources. However, I'm sure that doctor training will be of a similar standard and the effectiveness of your treatment will be down to the individual. There are several world class vasculitis teams operating here and it would be well worth getting a referal to one if you think your current specialist lacks experience with Wegener's patients.

[chrisTIn@]

Does anyone know how we get Wegeners. I used to think I was ultra fit never taking a pill...


I asked the doctor that diagnosed me the same question. She said she would be famous in the medical field if she new.

If we knew what causes Wegener's Granulomatosis, we also would be able to prevent it.
I was also healthy till my diagnosis.

[Jack]

There seems to be a preponderance of people with a previously good health record on the forum. I heard a discussion once about auto immune diseases that was speculating about the variations in the trigger levels of different people's immune systems. The researcher was saying that there is a natural variation and people with the more sensitive systems were more likely to have it trip over into the area of auto immunity.