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Thread: Bleh

  1. #21
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    Quote Originally Posted by Debra C View Post
    And a note for allergy sufferers, I learned from this girl when I was in Fl. that her dr. told her to get honey that was made from a 25-50 mile radius.And take a few teaspoons a day. I guess it works kinda like a vaccine ,since you are ingesting the same pollen that is in the air around you ??!! It helped her,they sell it at most health food stores.
    I do this now too Debra, but I heard the magic honey number was 17 miles from your home. Maybe in the city, the bees go farther? (-8 Ever since I started eating more honey, my outdoor/seasonal allergies are all but gone.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  2. #22
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    Quote Originally Posted by MikeG-2012 View Post
    I do this now too Debra, but I heard the magic honey number was 17 miles from your home. Maybe in the city, the bees go farther? (-8 Ever since I started eating more honey, my outdoor/seasonal allergies are all but gone.
    It's cool that you've gotten those results, Mike. I'd heard this about honey and allergies for years and sort of discounted it, thinking it was just a theory that made some sense but doubting that it would make that much difference in practice. I do have access to local honey, probably within 17 miles, though I'd have to check. The local stuff is pretty expensive, but probably no more so than allergy meds and more pleasant to ingest! I'll have to give this some thought, for sure.
    Anne, dx'ed April 2011

  3. #23
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    Well the CT showed nothing substantial in changes...though that makes me think the way I feel doesn't make much sense. My spleen was slightly enlarged which was new. Probably from the drugs we are on. Technically it can be Wegeners Affected but I'd think that would be more pronounced. Waiting to hear back from the doctor /shrug.
    ~ Bob

  4. #24
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    Well Bob that's good that the ct showed nothing. Hope you can figure it out soon.
    Life isn't about how you survive the storm, but how to dance in the rain !

  5. #25
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    Bob,
    I'm glad that your lungs look pretty good. We have the same Doc and I went off of Cellcept in Feb and seem to be doing ok on just Preds and Bactrim will have my 1st Rtx maint. at the end of June. I had always still been on Cellcept when I had my other infusions. She had stated to me that based on a study, we could be receiving to much Tx and that is a bad thing too. I had wanted to go off of Cellcept, because I had felt like I was being poisoned on it, so I was a happy camper. She told me about the 4 verses the 2 also and it seems very inconvenient and expensive for us too. Wishing you all the best!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  6. #26
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    So they had me stop CellCept in preparation for my upcoming infusion. ANyone stopped cellcept cold turkey. I almost feel like i'm having a bit of withdrawl as the amount of fatigue has spiked since going off. Not stopped anything without starting something else in a while
    ~ Bob

  7. #27
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    Did Dr VF take you off cellcept? I stayed on mtx while getting infusions and had no problems.
    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

  8. #28
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    Bob,
    I stopped taking Cellcept in Feb (my choice), and don't recall any extra fatigue or side effects. The reason I stopped taking it was because I felt like I was having side effects from taking it for so long. Dr. VF agreed to let me try to just take Rtx infusions every 6mos and see how that would do for me. In the past I always took the Cellcept along with the Rtx. When the Doc and I were discussed this she mentioned a study that showed that some patients were getting to much treatment, and that it was causing problems like to many infections. It is so individual for all of us and she said that the study shows that sometimes less is best. I am wishing you all the best, you may be more fatigued because you are flaring.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  9. #29
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    She did take me off. Evidently Cellcept and RTX don't play nice together. Though I didn't ask for details.

    You are probably right Jaha, it's probably a combination of the flare along with the change of meds making it seem more noticeable
    ~ Bob

  10. #30
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    I had to stop Azathioprine just before I started RTX, so I guess it makes sense to stop cellcept.
    I'm also on 4 infusions of RTX (2 so far) rather than the 2 doses that previously seemed the norm.

    Hope things improve as soon as possible for you. Am I right in thinking RTX takes a while to show it's benefits?
    Diagnosed April 1995

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