Wegeners G

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Hi I am 21 I was diagnosed with the disease when I was 16 after 3 years on steroids my doc stopped it , I was doing fine but last year again I got the problem and again they started my steroids . Now I have not taken steroids from past one month doing fine now just a bit numbness in my hands well that can be because of other reasons also. I am taking all my rest of meds. But wanna know if it's OK if I don't take steroids

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  • Posted

    Hi K

    Some advice if I may.(I've had WG for 20 years)

    1. Make sure your medic is a Rheumatologist with experience of WG.

    2. Get blood test to ensure disease is in remission.

    3. Ask medic to plan tapered withdrawal of steroids.

    Any other course of action is high risk....but it's your life.

    Good luck

    Dave

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  • Posted

    I would suggest that Dave's response is spot on, i had PAN for 5 years when i was 21 and then got GPA when i was 51. I am still on all my meds......likewise ensure that you have an internal specialist with Vasculitis experience.......

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  • Posted

    Hi I got diagnosed 4 years ago and have never been on steroids. The disease causes me intermittant ear, nose and throat problems and has also had a go at my lungs. I discussed all of the medication options at the start of the journey and pros and cons side effects etc and have found an immuno suppressant that seems to work and then I come off it when i'm in remission which seems to happen after 6 months. I guess I am lucky that I don't so far need anything stronger, and the pattern seems to be 18 months ok then 6 months treatment. I would discuss options with the consultants and push for options. 

     

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