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  1. Replies
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    Hi guys! Thank you all for sharing your...

    Hi guys!

    Thank you all for sharing your experiences with me, feel a bit less nervous now!

    I go in for my bronc tomorrow morning, they are doing mostly to get "slime" samples from my lungs etc...
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    What is a bronchoscopy really like?

    I'm having a bronchoscopy next friday and am a bit worried. :/

    How bad is it really/what should I expect?

    I've had a camera down my nose more times I can count at the ENT but I am thinking a...
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    2,643

    I live in the UK but am from Sweden and I fly...

    I live in the UK but am from Sweden and I fly back home quite regularly. I just take extra precautions like someone already mentioned.
    I use a face mask, a nasal spray that helps "fight" off...
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    I have not used any myself but have several...

    I have not used any myself but have several friends who both smoke and use cannabis oil.

    I think it's the oil that's really interesting and would love to see some "official" - truly independent...
  5. I know how you feel :( This summer I was put back...

    I know how you feel :( This summer I was put back on pred n last time I had an appointment at Addenbrookes the doc said he thinks I've got pred induced cushings as well. Got very bad moon face, new...
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    lost my voice, help!

    I need some advice!
    I've got the worst cold I've ever had and have completely lost my voice! So far I've only been taking paracetamol and drinking a hot drink made with ginger, lemon, honey and...
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    I'm on just pred and bactrim + lanzoprazole at...

    I'm on just pred and bactrim + lanzoprazole at the moment and am tapering the pred by 10 mg a month. I am at 30mg now.
    I had my RTX infusions in August and will have another round in February I...
  8. Thread: Septra

    by malin
    Replies
    36
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    7,301

    For the stretch marks, I don't know if you have...

    For the stretch marks, I don't know if you have it, or something similar where you are but here in the UK I use Palmers cocoa butter, they have a "normal" cream and then one thats specifically for...
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    Update & another one goes to Addebrookes

    Hi,

    Thought I would do a little update, I have just come back from an appointment with the vasculitis center at Addenbrookes hospital at Cambridge, got to see Dr. David Jayne! :) I also ended up...
  10. Thread: Facebook

    by malin
    Replies
    53
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    8,724

    OMG Thank you Sangye! I have to admit, I don't...

    OMG Thank you Sangye!
    I have to admit, I don't understand Twitter but that made some of it a little bit clearer! lol I am usually very computer savvy n stuff but I just can't get my head around...
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    I sweat really badly from my hair/back of head...

    I sweat really badly from my hair/back of head when I'm out n about, like when shopping etc. Not really from over exertion but just moving around. It's horrible and I feel like everyone is just...
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    I am in the same boat as you, am going through my...

    I am in the same boat as you, am going through my worst flare ever and at end of september I will be without a job. Trying to find a new one that I feel I could actually cope with is almost...
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    Have just had appointments with both Renal and...

    Have just had appointments with both Renal and Rheumy. Things are getting better at the moment, my creatine levels are going down, was around 190 when I was admitted to hospital and it is down to...
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    Hi Everyone! Another update, the rash is gone,...

    Hi Everyone!

    Another update, the rash is gone, the bladder issues are getting better, I think it might have been an uti coupled with my period! :p ( i have very irregular periods due to my pill) ...
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    Thanks for all the best wishes n support! :) ...

    Thanks for all the best wishes n support! :)
    It's been a bit of a rollercoaster lately, almost like being diagnosed again. I have now had 2 RTX infusions, don't know if I will do another one yet or...
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    Hi Everyone, Thank you for your support and...

    Hi Everyone,

    Thank you for your support and best wishes.

    I am very very tired but will try to do some updates :)

    I had three days of 1000 mg pred infusions and then on Monday I had my...
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    in hospital due to kidneys :(

    hi! quick update from hospital!
    was admited frday due to kidneys, tvey say the are inflammed. got iv pred 1000mg for 3 days then 60mg tablets. dont know how long for . getting rtx infusion tomorrow....
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    Am fairly sure I've now developed crusting. This...

    Am fairly sure I've now developed crusting. This morning my nose felt blocked and "full up" so I blew my nose and this large, flat chunk came out with blood all over it, after that I had a nose...
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    Wait time for appointments?

    If you are having a problem/worry/new sympton, not feeling well/feeling worse etc, and you are worried about it and want to have checked out, how long do you usually have to wait until you get an...
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    I know this is an old thread but I thought it...

    I know this is an old thread but I thought it better to revive it than start a new one :p

    I am wondering, does crusting in nose mean saddle nose eventually? Or is saddle nose a completely...
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    I used to have a very bad moon face too, I...

    I used to have a very bad moon face too, I remember having to go get my first ever photo id done, it was not fun being a 16/17 year old having to go get my first ever photo id taken with a massively...
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    I'm 24 now and I had my first symptoms about a...

    I'm 24 now and I had my first symptoms about a month before my 16th birthday and was diagnosed about 2 months after my birthday. My initial symptoms was ear involvment, at first doctors just thought...
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    alternative therapies for joint problems?

    Hi everyone!

    I have been having major problems with joint pains recently and I'm trying to find different options for alternative treatments. I don't want to go back on pred as it will just mask...
  24. Thread: Fatigue

    by malin
    Replies
    77
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    13,768

    Fatigue is one of my main problems as well, that...

    Fatigue is one of my main problems as well, that and joint pains :(

    I used to find it very hard to explain how I feel to family and friends but found "the spoon theory" that I use all the time...
  25. Oh, ok :( really don't want to have to do a...

    Oh, ok :( really don't want to have to do a biopsy.
    Could Weg's still affect your kidneys without any other tests showing up eleveted? All my blood work is fine and the ultrasound I had last year...
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