Is this normal?

[ISABEL12]

I have been having bother with swelling underneath my eyes since b4 xmas eventually seen eye specialist today who said it was definitely connected with my wg's but now he has to write to my respiratory consultant to administer the drugs required to clear it up. Is this normal? Im only on 6mg prednisolone at present, ive had wgs for 2 years!!!! xx

[John_Mills Volunteer]

Medication and treatment for WG would not normally be administered by an eye specialist because it has so many other implications.

Did the eye specialist indicate what kind of drugs he thought you might need to clear the the swelling underneath your eyes?

What treatment have you received since you were first diagnosed?

[ISABEL12]

He said that he thought they would probably increase prednisolone or administer a maintenance drug?

I was on 60mg prednisolone at the start along with cyclophosamide orally for 6 months.

i have been on 6mg for a year now

[John_Mills Volunteer in reply to ISABEL12]

The normal procedure is to have Cylophosphimide infusions and high dose predisolone to get the WG under control this is known as the induction phase. It is normally followed by a period of maintenance drugs using less powerful drugs such as Azathioprine or Mycophenolate or Methotrexate along side lower dose prednisolone. This is the standard treatment.

I am surprised that you have received no maintenance medication apart from prednisolone since the Cyclophosphimide.

It will interesting to hear what your Respiratory Consultant has to say.

John

[ISABEL12 in reply to John_Mills]

John, I asked my respiratory consultant after reading posts on this website and facebook why I wasn't administered Azathioprine and he told me that I didn;t require it. So I think this will be good, I only saw him last week and he told me that he hadn't seen eyes like it before but didn't think it was related to wg;s as he had 2 patients before me and they didnt have eye involvement!!!

[John_Mills Volunteer]

Hello Isabel,

If I had a consultant whose experience of WG was 2 other patients, I would be very worried. WG is a VERY variable disease and needs to be treated by someone who either has lots of experience themselves or at least is discussing your case with people who do. For example, the vasculitis clinics at Cambridge and Birmingham see dozens of cases of WG every week. That doesn't mean you have to travel all the way there. They will very happily discuss cases with other clinicians anywhere. Of course, there are other centres in the UK. But you don't want to be part of your consultant's learning curve where he learns by his mistakes - and you might be one of those mistakes! It's your life, your future, your eyesight that's at stake. There are accepted guidelines for treatment published by proper medical bodies. Your consultants should be familiar with them! If not, get another consultant.

John.