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...
Type: Posts; User: Donnak06
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...
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...
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...
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.
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...
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...
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...
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...
Yes I did go into remission and I am now on cellcept and have been for four years.
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...
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...
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...
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,...
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...
"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...
"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...
"great i'll give a try, anything is worth a try".
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
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...
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...
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...
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...
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...
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...
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...