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  1. Replies
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    I'm so so sorry to hear this about Phil.

    I'm so so sorry to hear this about Phil.
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    Pregnancy and wegeners

    Hi,
    I'd like to hear from people who've had a pregnancy after being diagnosed. Did it make the wegeners worse - ie) flare up again? Did you need increased medications?
  3. Thread: Pred Insomnia

    by MCC
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    Yes actually that is just what I did. At my worst...

    Yes actually that is just what I did. At my worst I was going to bed at midnight and getting up at 4am.
    But for me, it wasn't a case of even feeling like I needed sleep, I felt quite superhuman and...
  4. Thread: Pred Insomnia

    by MCC
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    are you taking it first thing in the morning?...

    are you taking it first thing in the morning? Don't take it in the evening/afternoon as then your body has not had a bit of time for it to wear off before you try and sleep.At high doses I still...
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    Hi, step away from the self diagnosis sites! It...

    Hi, step away from the self diagnosis sites! It is only going to lead you to have massive anxiety about what's wrong with you, whilst conclusively giving you nothing.
    Symptoms of Wegeners are...
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    Likelihood of kidney problems

    Since my relapse after 2.5 years off meds I find myself preoccupied with the future.

    I felt I had beaten it but now feel a bit doom and gloom and like it's going to 'get me' in the end.
    Reading...
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    Paleo is much too meat heavy and will increase...

    Paleo is much too meat heavy and will increase cholesterol ?Paleo? Diet Leads to Worsening Cholesterol | Physicians Committee.

    Vegan is the best diet IMO. Watch food matters FOODMATTERSŪ |...
  8. thank you. How long have you been diagnosed for,...

    thank you. How long have you been diagnosed for, and do you have damage you are concerned about?

    I definitely am one of the lucky ones in that having wegeners has not affected my life a great...
  9. 1. How long do you think you had Wegener's before...

    1. How long do you think you had Wegener's before you were diagnosed. Difficult to say, I was very ill for maybe 3 months but I guess I actually had it much longer.
    2. By the time you were diagnosed...
  10. I cant remember now sorry Debra, quite a while. I...

    I cant remember now sorry Debra, quite a while. I was on medication for two years in total, so the prednisone must have been quite some time of that. I started on 60mg.

    edit: i looked back on past...
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    Another good documentary on how diet effect...

    Another good documentary on how diet effect health is FOODMATTERSŪ | Natural Health & Nutrition | FOODMATTERSŪ



    PS. NO I am not saying quit your medication in favour of a healthy diet.
  12. The taper thing is different for everyone and...

    The taper thing is different for everyone and every doctor. Mine was 10 - 7.5 - 5 - 0.
    I had no problem going from 5 to 0.

    IGNORE ^ got it wrong :flapper:
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    Did you look at the link I posted? Nothing...

    Did you look at the link I posted?

    Nothing will convince me that lots of butter, meat and cream is a good thing. You will end up swapping autoimmune disease for heart problems :( I agree with...
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    Atkins or high meat/animal fat diets are regarded...

    Atkins or high meat/animal fat diets are regarded as quite unhealthy now, I'm really suprised that your doctor recommended it. And the fact your bad cholesterol went up is proof itself it's not doing...
  15. They don't all say that. Sure there are quite a...

    They don't all say that. Sure there are quite a few who are entirely off meds.
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    Where did I say that I was fighting the fact that...

    Where did I say that I was fighting the fact that meds are necessary? I said the opposite.

    I don't agree with you personally, being wary and mindful does not increase your chances of the drugs...
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    from here: Azathioprine (Imuran) | Medicine |...

    from here: Azathioprine (Imuran) | Medicine | Patient.co.uk

    I was told by my doctor to wait at least a year after coming off it.
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    I think it is sensible to be wary of the...

    I think it is sensible to be wary of the medication we take as there is no denying it is toxic (see my other thread!) and I can understand your friends concerns as I have them too. As I understand...
  19. Thread: Vaccinations

    by MCC
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    thanks, this just makes sense to me. Will look...

    thanks, this just makes sense to me.

    Will look into live ones a bit more.
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    Imuran I was told was one not to use in pregnancy...

    Imuran I was told was one not to use in pregnancy and the leaflet online backs it up "

    [*=left]You should avoid becoming pregnant while you are taking azathioprine. Make sure you have discussed...
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    Whilst probably not an issue BECAUSE of the...

    Whilst probably not an issue BECAUSE of the disease, you should definitely stay out of the sun when taking imuran! From the imuran leaflet online:
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    Thanks for your replies. I don't think it's...

    Thanks for your replies. I don't think it's outrageous not to want to take the medication. I would have assumed that most of you do not like popping pills everyday - it's a reminder of being ill and...
  23. Thread: Vaccinations

    by MCC
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    thanks for that very useful.

    thanks for that very useful.
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    thank you.

    thank you.
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    Because the medication for Wegeners is highly...

    Because the medication for Wegeners is highly toxic and damaging in itself. Just one example: your risk of bladder cancer increases x 44 with cyclophosamide. Yes I know it's lifesaving but if I can...
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