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    Re: Symptoms DURING remission.

    Hi

    I developed subglottic stenosis whilst in remission. I was in remission for 20 years and then developed symptoms including subglottic stenosis, I went on treatment and all was OK then after 3...
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    Re: Azathioprine - Mycophenolate mofetil

    Hi Angela

    I have been taking Mycophenolate for 5 years now with virtually no side effects. I started on one tablet a day for two weeks, then it was upped to two tablets a day for two weeks and I...
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    Had first dilation

    I had my first dilation yesterday and just thought I would let you know how it went in case anyone is facing one. I was really nervous about it but there was really no need. I went down to theatre...
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    Re: Wegeners is back!

    You could ask if you could try mycophenolate or cellcept as its known, I did get stomach pain and really tired at first but this only lasted a couple of weeks and now I don't have any side effects.
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    Re: Wegeners is back!

    30 years without meds was great but at the time I was diagnosed the doctors did not know much about the disease and they didn't know you could have a flare, they discharged me after 5 years and I...
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    Re: Wegeners is back!

    I've also been told that I will have to stay on maintenance meds for the rest of my life as I had a flare after 30 years which is quite unusual. They are doing research all the time though and I'm...
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    Re: First dilation

    Hi Lilly I'l let you know once I have a date, they said it should be in a couple of weeks as soon as they can fit me in. At least I will be asleep while they do it and they said that I should be...
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    First dilation

    Hello everyone, I've just returned from ENT and they have scheduled me for a bronchoscopy and dilation, they are not sure until they have a proper look whether it will be balloon or laser. Bit...
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    Re: First Cytoxan Infusion ...

    Yes I did go into remission and I am now on cellcept and have been for four years.
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    Re: First Cytoxan Infusion ...

    Hi Patty I had Cytoxan infusions and the only thing I noticed was that I was a little tired on that day and the day after. They give you an injection for nausea so you don't feel sick, they also...
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    anyone in Hull UK

    Hi Is anyone based in or near Hull in the UK. I would just like to know which doctors are treating you as I don't think mine is a wegeners specialist its Dr Kallankara, Rheumy and ENT Dr Jose. It...
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    Re: Tapering on predizone

    Sorry to hear that I hope you improve. I felt quite sick on Cytoxan tablets but they switched me to infusions which I had once every two to three weeks and I didn't feel sick at all on these. Maybe...
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    Re: Tapering on predizone

    Hi Bob I had a pretty hard time getting off the pred. Once I got below 20 every time I reduced, and I was only reducing by 1mg, I got headache, like a migraine headache that lasted a couple of days,...
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    Re: Subglottic Stenosis

    My subglottic stenosis has not bothered since last year when I got a chest infection and breathing got quite bad had to have 3 lots of steroids until it settled down. Been Ok for a year until I got...
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    Re: Subglottic Stenosis

    "Many thanks for the info. I think I may need to have a dilation done I'm seeing the Consultant on the 19th Jan so will get more info then. I think I will actually look forward to it if you can...
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    Re: Subglottic Stenosis

    "Many thanks for the reply. The sinus infection seems to be improving so I'm hoping my breathing will too. I'm on a short course of steroids and they are helping. I'm not sure if I fancy trying...
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    Re: Subglottic Stenosis

    "great i'll give a try, anything is worth a try".
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    Re: Subglottic Stenosis

    Hi Pete

    I am using a saline solution in the nebuliser what is mucinex? Can I get this in the Uk?

    Thanks for the reply
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    Subglottic Stenosis

    Hello everyone, its been a long time since I posted on here, I posted 4 years ago when I was diagnosed with a flare after being in remission on no meds for 25 years. Recently, I have been having...
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    I was in remission for 25 years and felt back to...

    I was in remission for 25 years and felt back to normal. I then had a small flare a year ago, they don't seem to know why it happened after all those years. I'm now on maintenance meds, cellcept...
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    I did start off on a low dose 500mg per day, then...

    I did start off on a low dose 500mg per day, then upped it to 500mg twice a day and I am now on 500mg three times a day which is still quite a low dose but I will be staying on this. Did they start...
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    I have been on Myfenax which is the generic brand...

    I have been on Myfenax which is the generic brand of Cellcept for 11 months. I did find that in the first few weeks I had stomach pain, and a lot of fatigue. I can't remember any problem with...
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    I found when going from 17.5mg to 15mg it was v...

    I found when going from 17.5mg to 15mg it was v hard felt so tired. Now when I reduce only by 1mg I still feel a bit tired and I get a sore throat and a cough for a couple of days. The doc said...
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    Apparently, the latest research states that there...

    Apparently, the latest research states that there is less chance of a flare if we stay on the maintenance meds for at least three years and then some people have to stay on immunosuppresents at a...
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    Maintenance medications

    I haven't posted for a year when I was first diagnosed with a flare up after 25 years of being in remission on no meds. Since then I've had 3 cyclo infusions and was on 60mg pred, I'm now down to...
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