How it all began..

[Alysia]

.My doctors didn't have a clue and still don't really except one doctor who discovered it. The generel feeling is that they can't cure me so they will keep me comfortable until I die which means morphine and all sorts.

Dear Barbara,
it is time to change your docs. don't stay with them if they don't realy treat you. find another doc, experienced one. there are treatments that can help you.
your horse need you for many years so you must take care of yourself.

[Linda22]

Barbara, I agree with Alysia you need to find another doctor that knows what he is doing. Don't give up, life is too precious!!!

[Linda22]

Hi Anth, thank you and I am sure he is watching over all you weggies, and if I know Brandon he is really giving the doctors a heard time

[goosey]

Hi Woz, just read your post & being from Sydney too I was wondering if you were talking about Concord hospital. They have been treating me now for 2years & the doctors & nurses are just wonderful to me.
Believe me it makes such a difference. I remember the joint pain & hope it wont come back when I'm off the pred.

[woz]

Hi Goosey, I have had all my treatment, in my local Hospital, Up here in Lismore(northern N.S.W.). It is only a very small Hospital, compared to Concord, But the level of care is comparable with any five star hospital, anywhere. I an nearly off pred, I'm down to 3 mg, 3 more weeks, then its party time. How long have you been on azathioprine, and how much do you take?

Regards woz.....

[goosey]

Hi Woz, the doctors say I'm now in clinical remission, anca down to 0.5. right now I'm on 5mg of pred, have been on that now for a bit over 6mths. Will be seeing my wegs dr next week so i may be able to go down to 3mg. I have been on aza now for 18mths, I started on 25mg twice a day to see if i could tolerate it ok. I'm now on 50mg twice a day, I'm guessing I'll be on it for a long time & hoping my remission will last as long as my dad's (13yrs).The drugs he was on were not as good as they are now so the longer we live the more they will find out about this horrid wegs. I did get gastro at the begining of this year & was in hospital for 6days as it would not go away. They had to take me off aza & it cleared up the next day.
Cheers Goosey.

[woz]

Hi Goosey, My anca level is now in the normal range, and my blood work is all good, I'm only seeing 1-2 doctors per month, compared to 2-3 every week. Are you seeing a weg specialist in Sydney, or like me and see many doctors ( 5 Specialists, plus my GP). I would be interested to see if Australia has any weg specialists. Is it any more advantage to take aza 50 in the morning, and 50mg at night. I was doing that and my doctor said I can take it in one dose if I like.

Regards woz.....

[goosey]

Hi Woz, I only see one doctor at Concord ,every 3mths now,unless something goes wrong with me & then I ring the immunology dept. & they will contact me. Yes they do have Wegs specialists at Concord & they also cover other autoimmune diseases as well. I must google it to see if there are any more around. I'm going to Concord next Wed so I'll ask about taking aza in one dose & see what they say. I do have a very good GP & as I have to do bloods every 6weeks the results are sent to her as well as Concord so if they are a bit off my GP rings me. I like to know everything my body is doing now.
Cheers Goosey.