I was diagnosed with WG 21 months ago, - Vasculitis UK

Vasculitis UK

7,857 members6,880 posts

I was diagnosed with WG 21 months ago,

ISABEL12 profile image
5 Replies

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?

Written by
ISABEL12 profile image
ISABEL12
To view profiles and participate in discussions please or .
Read more about...
5 Replies
John_Mills profile image
John_MillsVolunteer

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 profile image
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 profile image
ISABEL12 in reply toPaulBingham

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 profile image
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 profile image
ISABEL12

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

Not what you're looking for?

You may also like...

Just been diagnosed with WG

hi I'm 23 and just been diagnosed with WG Im not a 100% what it is still confused but getting...
Louisexx profile image

Do I have WG ?

I have in the past year had a problem with my nose, which is very sore,dry and crusty, I also have...
bowler profile image

Son of 14 just diagnosed with WG, any advice?

He fell in on holiday in Greece last week, luckily the medical treatment he received was brilliant,...
julesfarm profile image

do i have wg

was told i had wg 2 years ago no treatment was given since then i have constant headach neck pain...
carole1960 profile image

Diagnosed with GPA over 2 yrs ago.

Hi, I am 63 and have been on the usual cyclophosphamide and prednisolone to treat Wegners...
Noza456 profile image

Moderation team

See all
zoe69 profile image
zoe69Administrator
Suzi70 profile image
Suzi70Administrator
JaneLE profile image
JaneLEAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.