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Thread: Finally getting off cytoxan ! and lowering preds

  1. #191
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    Wink

    thanks Sangye
    i have been doing that this last week or more , mainly tired and achy joints etc wet lettuce feeling ,mind willing body not ,
    did not discuss alternative in detail as we had talked for over an hour .+
    but it msy be my one brain cell not fuctioning but cant remember anyone mentioning rxt by injection on the forum how often would it be done do u think
    they did say it could not be done at their unit that he would have to talk to rhuemy about it
    anyway going to focus on eyes first
    one day at a time


  2. #192
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    They don't give rtx by injection. They give it by infusion-- an IV. Easy to confuse the words! It's done at an infusion clinic, not in a doctor's office. That's usually at a cancer center or an infusion clinic at the hospital.

  3. #193
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    think i remember someone mention it at renal ward when i had my kidney biopsy done , there was a man having his first infusion and he was there most off the day
    will have to see how things go
    thanks for getting me out of brain fog Sangye DEEx

  4. #194
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    Ok I have been for my wg check up with my consult ; First of all happy with Imuran but not happy with tappering of preds he is worried for me because of how long ive been on them
    So going to give in another go on 12mg at the moment going to try 1mg drop at a time trying to get to 7.5 mg
    Having major bloods done again Monday and x ray of hands /wrists and knees re my OA
    also asked to be a patient for doctors final exams !! in the next few weeks , of course said yes ,
    as wg consult says a great way to educate new docs how to dxt wg
    Also had first meeting with special care dentist and a special care dental consultant and yet again more students !!
    They were very good , in so much as the amount of time they spent with hubby and I and the information they give use
    They were meeting with anethertis sp in the afternoon and then they are going to write a care plan for myself ,wg consultant which we will both have to agree to regards extra anti b
    then they will speak to wg consultant aswell and we will have another meeting in three weeks time Hope that makes sense
    felt like information overload but getting my head round it now
    Marta took outline to show him , he was well impressed and also said he would help me if needed it or if we wanted any input from consultant point of view would be willing to help
    ps new eyes still working well espeically now i have got my reading glasses DEE x

  5. #195
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    Dee, how fast are you tapering the pred?

  6. #196
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    Hi Sangye we are thinking i try 1mg at a time with the option of putting up for a short periods if i getting any problems and also have access to wg daily if needed
    I was also suprised because specialst dentist consultant gave me her mobile number too

  7. #197
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    I meant how quickly are you tapering the 1mg each time? For example if you drop from 12 mg to 11mg, how long before you drop to 10mg?

  8. #198
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    Sorry Sangye misunderstood
    Im going to 11mg tomorrow see how i go if ok 10mg next week then maybe 10 /9mg .
    if thats not ok will have a go at dropping 1/2 mg at a time because my gp is less than five mins away i willing to give it another try
    seeing him tomorrow evening
    Last time it was the joint pain that bothered me ,plus mood swings worse than i have ever experianced
    will keep in touch may need your support to work through this one

  9. #199
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    Whoa, dropping 1mg a week? That's normally okay but sounds way too fast for someone who's been on pred for awhile and has had trouble tapering. (That's based on what I've been through and what Dr Seo has told me.) Did your doc say you can go slower if you want?

  10. #200
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    Just going to take it day by day said to ring him if i have problems , its because ive been on them so long he would prefer me on 8mg/7.25mg
    Dont worry i have taken your advice on board and will be careful Thanks Sangye

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