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Thread: 20 year old son

  1. #171
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    Quote Originally Posted by carriej22 View Post
    Sounds all so similar. I just wanted to come here to wish you guys well and that this can be beat. I am 27 now, was diagnosed at 22. First two years were rough. After my final round of Rituxan it took me about a year to get my breathing and coughing under control. I run up 3 flights of stairs now about 15 times a day. Doesn't wind me in the slightest. I still cough more than the average person. However I do very well, work full time... no complaints. He's got this!
    Thank you for that encouragement.
    Do you take steroids still?
    Azathioprine?
    Stay strong.

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  2. #172
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    Quote Originally Posted by carriej22 View Post
    Sounds all so similar. I just wanted to come here to wish you guys well and that this can be beat. I am 27 now, was diagnosed at 22. First two years were rough. After my final round of Rituxan it took me about a year to get my breathing and coughing under control. I run up 3 flights of stairs now about 15 times a day. Doesn't wind me in the slightest. I still cough more than the average person. However I do very well, work full time... no complaints. He's got this!
    that is so good to hear @carriej22 !
    Thanjs for sharing!! Something to hope for!
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  3. #173
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    Quote Originally Posted by Aneinu View Post
    We were very pleased with the doctors in UH as well.

    The rtx was completed and he took it well thank God. The main thing they are watching now is the lung/breathing issue. Baseline is 14. He came in at 12, dropped to 11.8 and now 11.2. Pulse ox is continually in mid 90's, so that is good, although he has shortness of breath at times (which he wants to disguise, for he knows that is the key to discharge). They will probably need another CT scan on lungs for ultimate discharge. Actually, scratch that. Rheumy fellow just came in and said that they wanna see hemoglobin stable before discharge. CT scan probably only if things get worse. His breathing is good, but not perfect (whose is?). Coughing is still there. Interesting that his joints are feeling better, which we assume is result of steroids.


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    I'm hoping he is discharged by now and home doing well! Keep us posted @Aneinu !
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  4. #174
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    Thank you all.

    He was discharged last Saturday night. Hemoglobin on the rise and feeling well. Scheduled for the second half of the rtx dose this Tuesday.

    The only concern is that he had this itching since Friday. Last time a week later he developed rashes all over. This time, only itching. He doesn't wanna take benadryl, for he thinks that will mask the allergic reaction, if there is one.

    We shall see.

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  5. #175
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    Sounding good. If benadryl only masked allergic reaction I don't think they would be giving it during an infusion. I think it is treatment of allergic reaction.

  6. #176
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    Another reaction to the rtx.
    Admitted to icu.

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  7. #177
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    He had another reaction in middle of rtx infusion. Extreme tightness in chest. Eyes, lips, nose and cheeks swelling. Rashes many places. Administered strong stuff (benadryl, epinephrine, steroids) and all back to normal after an hour or so. In icu overnight. Sleeping comfortably.

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  8. #178
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    Glad he is feeling better. I don't know if this article would help but it would be something you could ask your doc about. I went through desensitization for sulpha drugs many years ago and it was successful for me. In fact the success rate is very high for sulpha. I don't know what it is for Rituxan.
    https://www.hindawi.com/journals/crii/2015/524507/

  9. #179
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    Quote Originally Posted by me2 View Post
    Glad he is feeling better. I don't know if this article would help but it would be something you could ask your doc about. I went through desensitization for sulpha drugs many years ago and it was successful for me. In fact the success rate is very high for sulpha. I don't know what it is for Rituxan.
    https://www.hindawi.com/journals/crii/2015/524507/
    I tried it for sulfa and they quit on the second day saying it seemed too dangerous for me to proceed further.
    Last edited by drz; 03-01-2017 at 09:41 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #180
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    Thank you.
    That is very informative (although I must say, very much not understood by me, although I think I understood the basic concept)

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