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Thread: Now I'm getting angry

  1. #81
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    Sorry for taking so long to reply. Thank you all for your valuable input.
    Havent been able to see the dr yet.
    Now on imuran for 2 weeks at only 50mg. I take it with my evening meal at 6 pm. Almost exactly 4 hours later the dry reaching starts. So bad I carry a bucket around with me.
    Worse than that, all this week severe diarrhoea sets in at the same time. I mean it's like I just took the prep you have before a colonoscopy. It doesn't stop until you have nothing else in your body.
    Alysia said it felt like being poisoned. That's what I feel like.
    Every night when I take it, I think, here I go again. I don't feel I should take it but it says not to stop without the Drs consent.
    Honestly, wg is bad but my god, the crap we have to take is debilitating.
    Reading the stats, a large portion of the people with wg die from the side effects of the meds.
    I am sure these Drs have no heart. If they knew what we have to put up with we might be treated more humanely.

  2. #82
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    Quote Originally Posted by PJ2010 View Post
    Sorry for taking so long to reply. Thank you all for your valuable input.
    Havent been able to see the dr yet.
    Now on imuran for 2 weeks at only 50mg. I take it with my evening meal at 6 pm. Almost exactly 4 hours later the dry reaching starts. So bad I carry a bucket around with me.
    Worse than that, all this week severe diarrhoea sets in at the same time. I mean it's like I just took the prep you have before a colonoscopy. It doesn't stop until you have nothing else in your body.
    Alysia said it felt like being poisoned. That's what I feel like.
    Every night when I take it, I think, here I go again. I don't feel I should take it but it says not to stop without the Drs consent.
    Honestly, wg is bad but my god, the crap we have to take is debilitating.
    Reading the stats, a large portion of the people with wg die from the side effects of the meds.
    I am sure these Drs have no heart. If they knew what we have to put up with we might be treated more humanely.
    Forgot to write that I also had crazy diarhea. I think you must stop the Imuran. Call your dr. On the phone just to confirm stopping it. I was also on 50mg only. Enough is enough.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #83
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    PJ2010, that is definitely not a good sign, You can make yourself dehydrated. Have you tried taking the Zofran. My mother takes it a couple times a day and it helps her,you just let if dissolve on your tongue ( some,others you take with water ). I would call the drs. and tell them it is urgent that you get in too see him,you shouldn't have to wait this long. Good luck and hope you are able to get on something else.
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #84
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    Quote Originally Posted by Middlesista View Post
    Hope this gets sorted out for you - I hate nausea and vomiting but understand it is also a side effect of Methotrexate and I am not looking forward to it for sure.
    Sista, I never once vomited while on methotrexate. And the doc did start me on a lower dose so I'd get used to it. Sounds like the Imuran might be worse, at least for some. Just wanted to offer some encouragement again.... the most I've ever felt was yucky after taking MTX. And that pretty much went away. I hope the best for you on that.
    Anne, dx'ed April 2011

  5. #85
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    Quote Originally Posted by annekat View Post
    Sista, I never once vomited while on methotrexate. And the doc did start me on a lower dose so I'd get used to it. Sounds like the Imuran might be worse, at least for some. Just wanted to offer some encouragement again.... the most I've ever felt was yucky after taking MTX. And that pretty much went away. I hope the best for you on that.
    Thanks Anne! Did ok with first dose - lots of fatigue on 3rd day though.

  6. #86
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    I didn't vomit with either ctx or mtx. Aza threw me for a loop because doc didn't do liver enzyme test. While I didn't vomit on aza, I wish I had. I was really sick...
    Last edited by Pete; 03-19-2016 at 11:09 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  7. #87
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    Quote Originally Posted by Middlesista View Post
    Thanks Anne! Did ok with first dose - lots of fatigue on 3rd day though.
    The 3rd day... hmm, my yuckiness and fatigue was over by then, except for my normal fatigue. Glad it went OK and you'll probably find it improving with time. Not to get too off topic, since the thread is more about Imuran!
    Anne, dx'ed April 2011

  8. #88
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    All valuable input. Thanks.
    Yesterday morning after a very rough night I was feeling so unwell. Before showering I thought I might weigh myself. Three kilos lighter than three days earlier! Looking in the mirror my eyes were bloodshot. I looked terrible.
    I presented myself into emergency and upon arrival I was immediately taken into care. The dr and nurses were brilliant. Carried out many tests and checks and quickly put me on a drip. After a few hours I improved.
    They have made arrangements to see my specialist in the next few days.
    I asked the dr if I could please stop taking the imuran. I said after 16 days of forcing down the pill and then becoming violently ill I just can't do it anymore. She was terrific. Great sense of humour. She then said I could stop and that she was sure it is a side effect of the drug.
    Reading about the side effects it appears that whilst diarrhoea and nausea are common side effects they usually disappear after a short time. But when a patient suffers diarrhoea, nausea and vomiting and with that a rapid lose of weight, apparently very few cases are recorded.
    Last night I felt on top of the world. I had a beautiful dinner, watched some television and went to sleep feeling almost normal again.
    I should point out that the imuran was doing its job even though it was poisoning me. All my body pain was gone, initially my bloodshot eyes disappeared, my constant nasal discharge dried up and the pressure in my head was not there.
    It seems I'm allergic to imuran now as well as predisolone and methyltrexate. Starting to run out of options.

  9. #89
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    Oh, forgot to say. I asked the dr in emergency if she had come across others with wg. She said she thinks she did once.
    She asked questions on how it affected me. All credit to her, she had my file and had read up on it prior to treating me.
    A very good dr.

  10. #90
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    Hi PJ,

    Glad you're feeling better. Hope they can find a drug you can tolerate and is effective.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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