Wegners partial relapse???: Hi My consultant... - Vasculitis UK

Vasculitis UK

7,783 members6,757 posts

Wegners partial relapse???

sorefeetsoldier profile image
6 Replies

Hi

My consultant reduced my pred from a Happy 10mg 6 wks ago to7.5mg per day then after 3 wks my nose bleeds started Gp advised to go back to 10mg and i did but no change. Every morning bloody nose !!! So i have upped to 15 mg per day and noticed that all day no symptoms till i take my azathriopine in the evening after my Dinner.

So i was wondering if my immune system is working fine????? Until i take the Azathriopine????

Thank you for reading

S

Written by
sorefeetsoldier profile image
sorefeetsoldier
To view profiles and participate in discussions please or .
6 Replies
Sima1952 profile image
Sima1952

Hello S, have you spoken to your Consultant or GP about your concerns, because l think you should.

Best of luck, Sally.

sorefeetsoldier profile image
sorefeetsoldier in reply to Sima1952

Hi Thank you for your reply well yesterday after posting i had severe nosebleed lasting over an hour and went to hospital i spoke to my gp and have raised pred to 30mg and all seems well today apart from usual hunger pangs when i go on high dosage.

Thanks

S

Suzym2u profile image
Suzym2uModeratorVasculitis UK

It could be the Azathioprine is not controlling the GPA, it did not control John's GPA at all. I think it is essential you talk to your consultant.

Susan

sorefeetsoldier profile image
sorefeetsoldier in reply to Suzym2u

Hi Susan

Thank you for your reply im awaiting for one of them to get back to me prob next week sometime ?

Thank you again

S

jayf profile image
jayf

Hello. Jay here.

Wegener's since 2008.

I can offer 3 things I find make a real difference.

SinusMed, the nasal wash in a bottle. I can't tell my fellow sufferers enough how much using it twice a day has made a dramatic difference. I also put Bactroban (Mupirocin) nasal ointment in twice a day with a cotton wool bud.

Sugar : When I cut out it out the difference in pain and swelling was dramatic.

I know Paul McKenna is bringing out a book on how to lower/kick sugar on Jan 1st.

The impact on the body is so dramatic that recent respected studies all over the world are saying that it has the greatest external impact on Cancer, Diabetes, Heart disease, and Vasculitis.

Sterimar to keep the nasal passages moist.

A good HEPA filter on 24/7 to get rid of irritants.

I too lost my remission 4 months ago. Hellish pain. We all know how excrutiating it can be.

Mine I'm certain came back after the stress of losing my only sibling 6 months ago. The emotional pain was overwhelming. Stress is such a catalyst.

I hope some of this helps. Im currently on 10mg Pred after having had 3 cycles of cyclophosphamide.

Sinus Med Sinus Med. It really helps.

sorefeetsoldier profile image
sorefeetsoldier in reply to jayf

Hi Jay

Interesting what you were saying about sugar. It seems to cause many probs in society today. I also have type 2 diabetes and blood sugars go up n up with the pred. Good to know about your nasal remedies.

Thanks

S

You may also like...

Newly diagnosed Wegners with Polyangitis

have been taking steroids and Rituximab which have put it into remission. As my immune system is...

Wegners granulomatosis

unfortunately im having the nose bleeds and very aching body. All was good untill I was told to...

Wegners granulomatosis GPA

increasing 250mg each week and reducing the predsional (steriod) from 60mg by 5mg every two weeks....

Young children with Wegners / Vasculitis

by WGPA or vasculitis especially around airways, nose lungs etc. My daughter first became ill at...

Is this a Relapse?

2017 and was happy to hear that the Doc was going to reduce the MMF to 1 x 500mg morning and...