Vasculitis UK
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Vasculitis GPA (WG) and stepping down from Preds

hi was diagnosed with vasculitis GPA in may last year i had 6 lots of chemotherapy and high dose steroids 60 mg daily am now down to 5 mg daily then stepping done 1 mg every month.Also on 20 mg methotrexate

i wanted to know the Dr says all blood test are now normal and vasculitis is "melting away in the the background" but i still get a lot of resting joint pain and fatigue.

is this normal for GPA.

I am worried that this will come back as i read that it does not show in blood test all the while are the pains normal and what happens if the Dr takes me of the Methotrexate,do they keep a watch on you

Thanks Feeling Worried.

3 Replies

Hi there....hope you are feeling better soon. And I sympathize with the worrying. I am no expert, but also have gpa (diagnosed 2 years ago). When tapering off the prednisone, I felt a little more tired and achy every time I lowered the dose but nothing too severe and it went away after a week or two. My taper was pretty long when I got to the end. Everyone is different though and their reactions may be different. It seems really good that you are raising this to your dr if you have concerns....I assume your rheumatologist? You could talk to them too about monitoring into the frequency for blood tests etc since it might make you feel better to have a sense of the longer term plan to keep you well. Sending positive thought your way.

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I was diagnosed more than two years ago. Currently on 5mg preds and 150mg azathioprine. Plan is to taper preds very, very slowly ( the only way to success according to my rheumy). Then stay on the immunosuppressant for at least a year (2 probably) and if all goes well the taper aza as well. A long way to get meds free....

Monitor your symptoms and if you are worried talk to your consultant. I still have monthly blood tests but I have been told that when I am in remission (not medical) I will still have to check my blood every few months( did he say 2 or 3 times a year??).

Good luck!

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In my experience (17 years with gpa) you will continue to be monitored by a rheumatologist every 6 months when in remission. The aches and fatigue are just part of life for many of us im afraid but always tell your rheumatologist about them and any other symptoms you may get as, you're right, gpa can be present even when blood tests are clear. You will be monitored carefully while on methotrexate but if you do come off the treatment you'll still need regular bloods done - the rheumatologist will tell you how often (mine says every 3 months or so). Hope things continue to improve for you, lottie x

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