New to this Community: I am new to this group... - Vasculitis UK

Vasculitis UK

7,857 members6,880 posts

New to this Community

philtw profile image
5 Replies

I am new to this group but have been on other groups regarding vasculitis for a few years helping others with advice and support.....

I am 54 years, I had PAN when I was 21 years and went into complete remission after 5 years. In 2013 I was diagnosed with GPA. I relapsed again in 2016 and struggled to get it back under control. 7 months later I am now back under control, but I think it may have attacked my lungs again. I go for lung scan in June 2017 and bone density checks.

I'm currently on prednisolone, imuran, crestol, fosavance, Vit D and calicum. I've had rituximab x3 which helped to reduce my steriods.

Symptoms for both PAN and GPA were similar, but the only difference being that PAN affected my kidneys and GPA is affecting my lungs and respiratory system. Main symptoms were joint pains in fingers and feet gradually affecting my knees and made it painful to get out of bed and down the stairs. I also had painful and weeping nodules on my elbows, loss of appetite and weight loss.

Written by
philtw profile image
philtw
To view profiles and participate in discussions please or .
Read more about...
5 Replies
DevonLottie profile image
DevonLottie

Welcome to the group. I too have gpa, diagnosed 17 years ago. The introduction of rituximab for my treatment has made a massive change to my health and enabled me to ditch both steroids and methotrexate while remaining in remission. I do hope it does the same for you.

philtw profile image
philtw in reply toDevonLottie

I've had rituximab 3 times and managed to reduce my steroids however last year I went down to 6mgs and I relapsed it took me to December to recover it back albeit I went to 20mgs.......think that was the Dr been to optimistic to reduce my steroids.

DevonLottie profile image
DevonLottie in reply tophiltw

I reduced really slowly once I got to 10mgs. I did it at 1 mg drop each month which worked for me - too fast and I would have flared again.

philtw profile image
philtw in reply toDevonLottie

That's what I did last year 1mg per month from 10mgs but once at 6mgs I flared up again

DevonLottie profile image
DevonLottie

Maybe try again even slower?

Not what you're looking for?

You may also like...

Doubly Unlucky

How strange....... When I was 21 yrs old I was diagnosed with PAN (kidneys affected) full...
philtw profile image

Could toxic medication cause positive ANCA??

A newbie here—just joined. Could you please explain to me if it is possible for me to have tested...
beverlyann profile image

I’m new, confused and looking for support

Hi there, I’m new to the vasculitis group. What brought me to you guys is a possible diagnosis of...
Pop_pop20 profile image

New to all of this....

Hi everyone. I still feel relatively new to the Vasculitus world but I am hoping this group will...

GPA under control but still get joint pain

I have GPA which is under control but I still get joint pain. My rheumatologist has scanned my...
rwl89t1967 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.