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Thread: Hi From Oz

  1. #131
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    Mark, as I remember, you had an infusion of CTX along with the RTX, and since the CTX usually acts faster, you may have experienced the feeling of a pretty quick response. Now that injection may have worn off somewhat, but the RTX is still there in the background doing its work, which could take longer. I'm speculating that a little resurgence in symptoms could happen at this time, and when you get your next infusion of both CTX and RTX, you could experience another period of great improvement. Eventually, the RTX will ramp up its positive effect and you will maintain the improved feeling for longer periods of time. That is my theory, worth a couple of pennies, as I'm not a doc nor have I used RTX or anything but the oral version of CTX. I suppose that could be an advantage to the pills; it doesn't wear off as long as you keep taking it every day.
    Anne, dx'ed April 2011

  2. #132
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    Thanks all for your support...i get alot of that and answers from here so glad i found this forum

    Sent from my SM-G900I using Tapatalk

  3. #133
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    Ok so got 1st week blood results crp hone from 120 to 8 which is great but interestingly my white blood cells are still elevated. I thought the role of cyc was to reduce the wbc to put it into remission??? Immunologist said pred could elevate the wbc so could it be that my inflammation just gone down cause of the pred and because my wbc are still elevated not treating the disease?

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  4. #134
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    Your CRP was 120 and went to 8 - that is progress!! I see Prednisone increasing WBC frequently - did they do a differential ? That shows the breakdown of the different WBCs. The fact that your CRP is down indicates that the inflammation has decreased.

  5. #135
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    Yeah neutrophils still slightly elevated too

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  6. #136
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    Mark, like you I can remember feeling so frustrated with my slow progress in the first weeks and months after diagnosis. My rheumy reminded me that this is a serious illness and I would need some patience to let the drugs do their work. I'm on methotrexate and prednisolone, so different to you, but my lung nodules did clear and the other issues improved. Now 11 months later and some fatigue is still with me most days but very much improved, and my blood tests are all within normal range. I was told that the pred causes an increase in WBCs but that they should come back to normal as the dose reduces.

  7. #137
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    Oh thats all good news....yeah i guess i keep thinking its like any other illness where you get medication and clears up pretty much straight away....i need to learn patience 😊

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  8. #138
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    Quick update ive got my 3rd round of cytoxan and ritiximab this week...yay time for like crap again...haha...as long as it works thats the main thing...anyway question for you....i lost partial hearing in the left and when i received high dose 3x 500mg of prednisone it cleared up next day. About 4 weeks later its gone back to partial loss again 😕. Has anyone experienced this or had hearing loss and its returned back to normal after treatment and if so how long did it take to return?

    Sent from my SM-G900I using Tapatalk

  9. #139
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    Mark, sounds like things are moving along for you.... As for the hearing loss coming and going with high doses of prednisone, that is a good sign that the loss isn't going to be permanent....I'd guess that your eustachian tubes are inflamed, which is allowing fluid to build up in your ear, thus the loss, and the pred relieves enough of the inflammation to open them back up again and release the fluid, allowing hearing to return. I suppose there are other possible scenarios, as the hearing mechanisms are complicated. Just be glad they have caught it early enough to treat you in time to likely avoid permanent hearing loss. As for the amount of time it takes for hearing to return, I can't say, as my loss is permanent, and everyone's case is a little different. Best of luck in all of it!
    Anne, dx'ed April 2011

  10. #140
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    Thanks annekat...one further question with the treatment does this improve the sinus fluid. I thankfully have no more pain or inflammation and bleeding since starting treatment but should the treatment fix the sinus fluid also with time or will that need to be managed by decongestants etc??

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