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Thread: Update on Ingemlb

  1. #161
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    Hi inge,
    was wondering how you have been doing.

  2. #162
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    Hi Mrtmeo. I fell into the old trap. Typed an entire page and pressed the reply instead of post quick reply button and lost the lot so this is an abbreviated version lol
    1. Blood tests are all showing "no active inflammatory disease"
    2. Diabetes is under control with the insulin but have not yet managed to decrease it.
    3. Pred is going down, now on 16 (reduced from 40) and reducing at 1mg every 2 weeks. It takes about that long to get used to the new dose. MTX is up to 25mg.
    4. Stomach and Oesophagus have been good with practically no spams and chest pains so the extra somac must be doing something.
    5. Sinus flared up again after I stopped the sprays so I have restarted. Was coughing my head off but also having intermittent fevers so there may have been a cold lurking around. Not sure. Anyway its improving again so will stay on the spray for now.
    6. Still feeling lousy. Not sure why if all the markers are good. Could be the pred withdrawal but I am tired most of the time and when I have some energy and try to do a few things I am in terrible pain and fatigue within 10 minutes max. So all housework is done in 5 to 10 minute intervals with rests in between.

    However mentally I am trying to keep busy. Getting my poetry book ready for publication and also working on a translation of a book into german which has been a challenge as I need to brush up on my german grammar but I am enjoying the task and it keeps my mind off how I feel.

    I must start spending more time in this forum. Should finish the translation in a couple of weeks.

    How are you doing?
    "Slow and Steady wins the Race"
    All the best, Inge

  3. #163
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    Quote Originally Posted by ingemlb View Post
    Hi Mrtmeo. I fell into the old trap. Typed an entire page and pressed the reply instead of post quick reply button and lost the lot so this is an abbreviated version lol
    1. Blood tests are all showing "no active inflammatory disease"
    2. Diabetes is under control with the insulin but have not yet managed to decrease it.
    3. Pred is going down, now on 16 (reduced from 40) and reducing at 1mg every 2 weeks. It takes about that long to get used to the new dose. MTX is up to 25mg.
    4. Stomach and Oesophagus have been good with practically no spams and chest pains so the extra somac must be doing something.
    5. Sinus flared up again after I stopped the sprays so I have restarted. Was coughing my head off but also having intermittent fevers so there may have been a cold lurking around. Not sure. Anyway its improving again so will stay on the spray for now.
    6. Still feeling lousy. Not sure why if all the markers are good. Could be the pred withdrawal but I am tired most of the time and when I have some energy and try to do a few things I am in terrible pain and fatigue within 10 minutes max. So all housework is done in 5 to 10 minute intervals with rests in between.

    However mentally I am trying to keep busy. Getting my poetry book ready for publication and also working on a translation of a book into german which has been a challenge as I need to brush up on my german grammar but I am enjoying the task and it keeps my mind off how I feel.

    I must start spending more time in this forum. Should finish the translation in a couple of weeks.

    How are you doing?
    Hi inge,
    My mom had that bad cough with post nasal drip and then it turned into a cough of thick glue-like mucus that would hang in the throat, but after getting on the mofetil, it just disappeared.
    Now, she has severe constipation that I think is due to the mofetil.
    She can't take the Imuran because it caused severe nausea and vomiting.
    I know the mofetil is working because the blood in her urine has gone way down.
    I don't know of any other alternative left that she can take due to her kidneys, except plasma exchange which the dr won't due to medicare crap.
    I read in a clinical study that mofetil can cause a acute pseudo colonic obstruction which sure sounds like what she has.
    She is in her 5th month now and ANCA positive since month 4.


    Not sure if this will help, but a friend from the vasculitis foundation said that after she became ANCA negative, she still felt very ill for many months even tho her dr said the treatment was working and her body was healing.
    It took a year for the fatigue to go away and she has been doing fine and in remission since 2006.
    She has MPA.

    I sure hope your sinus issue resolves and u get your energy back.

  4. #164
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    Thanks Mrtmeo, Everything helps. Yes I am thinking I just need to be patient. with no active disease I should feel confident that no damage is being done and it's all a matter of healing now. Which is why I was happy to push ahead with the pred tapering. If I can get off the pred I will be very happy. Glad your Mum's cough is fixed. Mine is much better since I am back on the Nasal sprays. I haven't tried the Imuran. Only taking MTX and Pred. So far doing ok on that combination.
    "Slow and Steady wins the Race"
    All the best, Inge

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