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Thread: New old guy on the block

  1. #31
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    100mg of ctx is not high. I was on 150 when I was first dx.
    Phil Berggren, dx 2003

  2. #32
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    Hi Bob,

    I've been at 100 mg of Cytoxan for over a year except for about a week when I was on immuran. I had a flare while on immuran which may have been aggravated by a simultaneous reduction in prednisone dosage. Went back to square one with meds and am now gradually tapering off pred - down to 20 mg/day with no adverse effects so far. Will go to 10 mg in two weeks and stay there until mid-May. If that continues to go well, we may explore reducing cytoxan to 50 mg/ day.

    Seeing a urologist next week to see if cytoxan is messing up my bladder. May require another med change unless the issue is a UTI that wasn't completely killed with the first round of antibiotics.

    I agree with the praise given to Cleveland Clinic. I probably would have ended up there had we not moved away from Massillon a month before I got sick. I'm happy with the care I've gotten at OSU though.

  3. #33
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    Ah, ok you know I think I got my MTX and CTX dosages crossed in my head MTX was the once a week one I think.
    ~ Bob

  4. #34
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    Quote Originally Posted by mishb View Post
    ....I used to bite my tongue around my co-workers, you know those ones .....the ones that can't come in to work because they stubbed their little toe and it hurts to walk, or the ones that have a blocked nose ......... no worse, the ones that have a nose that wont stop running and they need to keep blowing and complaining at the same time.
    These days I just say "I'll swap with you" or "welcome to our world".......they soon understood what I mean.....
    Ah, Michelle. These days, I find it easiest just to say, "Well, we continue to live and breathe." I sometimes add, "...which is a great start." This seems to be enough.

    Al

  5. #35
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    Quote Originally Posted by Al View Post
    Ah, Michelle. These days, I find it easiest just to say, "Well, we continue to live and breathe." I sometimes add, "...which is a great start." This seems to be enough.

    Al
    Great line Al. especially the second bit. I must try it out sometime, or have you put a copywrite on it?

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

  6. #36
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    Quote Originally Posted by Dryhill View Post
    Great line Al. especially the second bit. I must try it out sometime, or have you put a copywrite on it?

    Jim
    I wish I had a dollar for every "bright idea" I've ever had, Jim. I might be able to buy a cup of coffee--hardly enough to involve a patent lawyer....

    Al

  7. #37
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    Hi ..Went to my rhemy on Tues, did a bunch of test, and was told to come back in a mth, she also started me on 50 000 units of vitamin D, Went to work yesterday, and had a small lunch and started to feel pain in my stomach, which as time went by , really hurt..So i check it out at the hospital and was dx with after blood test and urine and CT, Diverticulosis and urine infection, probaly cause by the Diverticulosis, also they gave me a note to give my GP that my Aorta demonstrates dense atheromatous calcification... they have me on antibiotics, and i feel like ****( no pun intended).. and this my be just the start... Has anyone had any of these problems before or after being dx with WG? Thanks for listening... Have a good day, and blessing to you all!

  8. #38
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    Quote Originally Posted by Isabella1759 View Post
    Hi ..Went to my rhemy on Tues, did a bunch of test, and was told to come back in a mth, she also started me on 50 000 units of vitamin D, Went to work yesterday, and had a small lunch and started to feel pain in my stomach, which as time went by , really hurt..So i check it out at the hospital and was dx with after blood test and urine and CT, Diverticulosis and urine infection, probaly cause by the Diverticulosis, also they gave me a note to give my GP that my Aorta demonstrates dense atheromatous calcification... they have me on antibiotics, and i feel like ****( no pun intended).. and this my be just the start... Has anyone had any of these problems before or after being dx with WG? Thanks for listening... Have a good day, and blessing to you all!
    A couple of questions, Isabella. How did they determine diverticulitis? Did they already know--say from a previous colonoscopy? or are they just guessing? Also, how did they know about the plaques? Ultrasound, maybe, or a CT scan? atheromas are sort of like granulomas, in that they can include immune complexes (with moribund macrophages and such), but are not generally associated with WG. Urine infections should not normally cause urinary tract infection, though if a diverticulum ruptures, that is indeed serious and likely associated with abdominal infection, but almost surely a separate issue for vasculitis. (There are, however, some kinds of gut vasculitis, which are as serious as WG.)

    Please let us know how these matters get resolved.

    Al

  9. #39
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    Thanks Al
    No never had a colonoscopy yet, did one of those scratch test things that the Canadian Colon Association sends you when you turn 50, ( 2 years ago)and it came back neg. They did did a CT , urine and blood work last night, and send me home w prescription in hand, after dx Diverticulitis, and the other things I mentioned ... Al, Not sure what you mean by guessing.. The CT showed the rupture, among other things... I did read up about Diveticulitis, and they way the Dr. made it sound, it's pretty common.... Not sure what he meant by that, What I read that it happens to ppl with poor diets and older Adults... I haven't ate meat in over 1 year, except the odd fish/chicken, eat loads of veggies, and fruit, quit smoking, 6 mths ago... and exercise. And you know what, I've never felt this terrible in my life, .. Maybe my earlier life style is catching up.... hmmmm? thanks Al...

  10. #40
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    Quote Originally Posted by Isabella1759 View Post
    Thanks Al
    No never had a colonoscopy yet, did one of those scratch test things that the Canadian Colon Association sends you when you turn 50, ( 2 years ago)and it came back neg. They did did a CT , urine and blood work last night, and send me home w prescription in hand, after dx Diverticulitis, and the other things I mentioned ... Al, Not sure what you mean by guessing.. The CT showed the rupture, among other things... I did read up about Diveticulitis, and they way the Dr. made it sound, it's pretty common.... Not sure what he meant by that, What I read that it happens to ppl with poor diets and older Adults... I haven't ate meat in over 1 year, except the odd fish/chicken, eat loads of veggies, and fruit, quit smoking, 6 mths ago... and exercise. And you know what, I've never felt this terrible in my life, .. Maybe my earlier life style is catching up.... hmmmm? thanks Al...
    Good that you/ve cleaned up your act, Isabella. Sorry that the earlier problems have come back to haunt you. Ruptures do happen though most of the time diverticulosis is asymptomatic. Usually, gastro docs recommend high fiber diets for diverticulosis. The fruits and veggies are a good start....

    Al

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