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  1. Thread: Questions?

    by Col 23
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    2,782

    Hi I say Whatever works for you, The amount of...

    Hi I say Whatever works for you, The amount of poison going through our bodies and in the air, not going to make much difference what we have. The Electrolytes makes sense too if your sweating lots ...
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    A third opinion required maybe, but given the...

    A third opinion required maybe, but given the overall situation I'm with Phil on this one. This should be guided by his Rheumy and a team discussion. I usually find that the Rheumy refers to other...
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    Hi Me2 Glad you mentioned about planning. I have...

    Hi Me2
    Glad you mentioned about planning. I have accepted so many invitations and not made it. So now I tell everyone that Im "in to spontaneity".
    Cheers Col 23
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    I think we all know our limitations, I presume,...

    I think we all know our limitations, I presume, sadly for many of us we have to create new dreams. Do as much as you can now. I have a saying "bad is good when worse comes along." Somebody I know...
  5. Thread: New Member

    by Col 23
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    2,718

    Welcome Randy sounds like you have had a lot to...

    Welcome Randy sounds like you have had a lot to contend with over the past 3 years. Heres to continued Remission.
    Col 23
  6. Thread: New Member

    by Col 23
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    2,718

    I didn't even know about WG attacking intestines....

    I didn't even know about WG attacking intestines. I also didn't know about long term pred doing damage to that as well.
    I did have a bowel infection at one stage if that counts. I suppose it can get...
  7. Thread: Pet Peeves

    by Col 23
    Replies
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    7,931

    LOL. Take all the masks you need.Self...

    LOL. Take all the masks you need.Self protection!!!!!.
    Col23
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    HI Phil Did you mean Oral Chemo instead of oral...

    HI Phil
    Did you mean Oral Chemo instead of oral pred? With the oral chemo (cyclophosamine )is that once a week on a lower dose?
    Col 23
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    Hi those choices and options sounds amazing. Do...

    Hi those choices and options sounds amazing. Do them all I say.
    Col 23
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    Hi Anne Hate to hear that your suffering and the...

    Hi Anne
    Hate to hear that your suffering and the health system just makes it worse. Wish I could help, my thoughts are with you and a big hug.
    cheers Col 23
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    Hi Phil again. Thought you deserved a special...

    Hi Phil again. Thought you deserved a special reply.
    How is the quarantine going?. Hope you have lots of interesting things to do and that your feeling much better.:thumbup:
    cheers Col23
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    Hi Phil, read with interest about that on here, I...

    Hi Phil, read with interest about that on here, I will talk to Rheumy about this on Friday. Can you outline a few benefits for me. Obvious one is not having to do the infusions at the hospital but...
  13. Thread: Pet Peeves

    by Col 23
    Replies
    28
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    7,931

    Yes I have the masks and hand santitizer and am...

    Yes I have the masks and hand santitizer and am diligent an obsessive about washing hands. With close friends and family I can get around
    reminding to wash thier hands after being to the shops and...
  14. Thread: Pet Peeves

    by Col 23
    Replies
    28
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    7,931

    Hi Anne Its the other way round they can give us...

    Hi Anne
    Its the other way round they can give us infections but they don't want to hear that. How does everyone get around people wanting to hug
    and kiss you everytime you go to a party. Im still...
  15. Thread: Hot Flashes?

    by Col 23
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    3,743

    Mmm the mental illness thingy.. Pred seems to...

    Mmm the mental illness thingy.. Pred seems to make me think Im loosing the plot but I was medically advised that while I'm still aware of symptoms and recognize whats happening Im okay. Whew!!!...
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    I was advised that increases in the ESR and CRP...

    I was advised that increases in the ESR and CRP indicated inflammatory but can also mean you have an infection. WBC usually alters 10 -14 days after chemo and they have to monitor this. I have to...
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    Hi Phil Sounds like the docs have you managed...

    Hi Phil
    Sounds like the docs have you managed well at the moment, hoping for good sailing weather and you get through this one.
    I'm all over the place at the moment. The Cyclophosamine infusions...
  18. Thread: Hot Flashes?

    by Col 23
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    3,743

    LOL Wish I could be as brave and assertive. I...

    LOL Wish I could be as brave and assertive. I usually Zip it and lock it and keep it in my pocket. My husband calls me the "big pretender". I always pretend I'm okay. He is my rock so supportive and...
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    How is your 12 year old girl getting on? So sad...

    How is your 12 year old girl getting on? So sad when I hear of young children being diagnosed with this illness. Although I think youth is on
    their side and a good chance to knock it into remission...
  20. Thread: Hot Flashes?

    by Col 23
    Replies
    18
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    3,743

    So over it. But battle on, whats the alternative?...

    So over it. But battle on, whats the alternative? I really cant believe this is happening to me. I think everyone with Wegs must feel the same.
    However sitting in the docs yesterday I felt lucky...
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    So pleased that you got to some sort of medicated...

    So pleased that you got to some sort of medicated remission. Yay. Hopefully your flare is just a minor and all goes well. I too keep getting the lung involvement. Have you had any advice on how long...
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    All the best Col 23

    All the best
    Col 23
  23. Replies
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    They usually increase my Pred for awhile if I...

    They usually increase my Pred for awhile if I start flaring. Hate the Pred so hard to decrease always have to suffer to get down on it. Hope your
    feeling better soon. I was on MTX before they put...
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    Process of elimination and reviewing of...

    Process of elimination and reviewing of accumulation of symptoms takes time. Wishing you all the best for a speedy Diagnoses. This illness moves very fast so sooner the better to stop any damage. All...
  25. Thread: Hot Flashes?

    by Col 23
    Replies
    18
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    3,743

    Same wet hair at times. Even my sunglasses fog up...

    Same wet hair at times. Even my sunglasses fog up if I have them on top of my head. LOL. Think my concoction is same as yours. I'm having cyclophosamine infusions every 3-4 weeks and currently on 25...
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