Hoarseness and coughing for 2 months

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Could this be a sign of relapse in WG? My husband goes for an MRI on Wednesday but I'm wondering if it could be his WG.

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  • Posted

    Possibly Courtney

    I have WG and each big flare up has been preceded by cold/flu/hoatsness symptoms. Three bits if advice if you are UK based . Addenbrookes - Cambridge is the worldwide centre of excellence for Vasculitus - your GP is likely to never have come across the condition. Get referred to Addenbrookes. My wife runs s carers support group for people who live with WG sufferers.Vasculitus UK is a brilliant group to join.

    Best of luck to you both

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    • Posted

      Thanks Dave, we live in the US, North Texas and I wish we had all the resources the UK has. but we do see a Rheumatologist and pulmonary Dr. regularly. My husband is suppose to get Rituximab every 6 months but he wanted to wing himself off of it for a bit and I think also that this is a flare up.
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    • Posted

      Hi Courtney

      For me Retixumab is great as it allows me to reduce Prednisalone. At Addenbrookes is David Jayne one of of the two top Vasculitus doctors in the world. In the US is Dr Peter Merkel - the other one. Try googling him

      Best

      Dave

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  • Posted

    Persistent coughing is always sign my WG is active, no cough no problem.

    I had daily and hourly coughing for years. Now my asthma and WG controlled by Symbicort. However when really stressed out with work coughing comes back & I can feel inflammation in chest/back.

    Good luck & keep me posted

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  • Posted

    Well I stay homelessness a lot and bronchitis a lot I did go see a ent and had some polys but still have voice trouble and I read it does cause this but my Dr. Say no and I get mad cause I read about it. My Dr acts like I am crazy cause I stand up for myself. He now says that once u do a ritumb treatment that u r cured I read I can still have flare ups. I need a new Dr. cause I feel I know more than him. He gave me diagnose 4 years ago after 8 months with no diagnose. I also read u need to have biopsy done to know for sure and he just checks me to see if active and I never am but I take pics of swollen joints to show him and he acts like that has nothing to do with wengers I read different. I stay sick with breathing and homelessness all the time. Good luck and I hope I got diagnosed right cause he put that ritumb in my body not being sure.
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    • Posted

      Good for you! You have to be your own advocate. They told us there is no cute for WG and everyone has a relapse if they do not continue the treatment and that the relapse would be worse each time. but I guess every case is so different there are still a to of unanswered questions. He has had a lung biopsy when he had his first relapse 2 years ago and that was because he had so much blood in his lungs, they had to clean them. It makes me nervous because my husband does not want the treatment anymore unless he begins to flare up because of all the damage it is doing to his bones...he had to have a full hip replacement last nov. Due to AVN which is due to all the steroids. Hopefully we get some answers soon. I wish you all the best! Keep the faith and be your own advocate!
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  • Posted

    Has he had a biopsy done at all?
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