I was diagnosed with WG 21 months ago,

[ISABEL12]

I was doing really well came off the cyclophosamide and prednisolone has been reduced to 6mg. I still don't feel like my old self. Is this normal for someone with WG?

[John_Mills Volunteer]

Usually when coming off the Cyclophos a maintenance drug is given... one such as Azathiaprine ....maybe Patricia will help answer this question has she as WG and is on Azathiaprine...

[PaulBingham]

Hi Isabel,

I was diagnosed with WG 5 years ago, Initially, I had a Cyclophosphomide 3 month period with heavy pred /steroid dosage which put me into remission. My post remission drug regime is Azothioprene, prednisolone( from 20mg to 5mg currently),plus a blood pressure drug and a few others.

Although I live a fairly normal life, the original symptoms of partial eyesight loss, partial hearing loss, dead feeling in my legs, kidney damage, joint pains plus a few others are ever present, which stops me from feeling and being normal. However I lead a fairly normal life.

I am NOT a doctor BUT it is normal to have an immune suppressive drug after the Cyclo regime and I would be surprised if your doctor had not prescribed this. If he hasnt. I would recommend that you ask him WHY.

All the best and happy Christmas

Paul

[ISABEL12 in reply to PaulBingham]

I definately haven't had any other drug Paul but have an appointment with my consultant on Thursday and i'll ask about it. I was doing really well up until about 6/8 weeks ago and now i feel as if my symptoms are worsening again, im asking myself will I ever feel better!!

Thanks Paul,

Hope you have a nice Christmas and a Good New Year

[PatriciaAnn]

Hi Isabel

Patricia here. Like the others I'm surprised that you weren't put onto maintenance therapy. The general rule is to get the disease into "remission" and then try to hold it there with one of the maintenance drugs and lowering doses of steroids. I'm currently on Azathioprine and 5mg pred.

As for not feeling like you used to do, well firstly WG is something that can take some time to get into remission. In your case it might be that your body isn't not coping without some medical/drug intervention. The other thing to remember is that, unfortunately, whilst we can get a good life back the chances are that this isn't going to be as good as pre WG.

[ISABEL12]

Thanks Patricia I have hospital on Thursday and i will ask x