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PREDNISONE DEPENDENT HELP

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13 years 7 months ago - 13 years 7 months ago #22745 by Yaquala
PREDNISONE DEPENDENT HELP was created by Yaquala
Hello in need of SERIOUS assistance. My daughter now 25 was diagnosed with ITP at 18 after awakening with a bleeding mouth and visit to ER had CBC of 3k. Needless to say she has been on a 6 year rollercoaster of treatments and hospital stays. She has been through most of the general treatments Rituxan, IVIG, WinRho and the ever dreaded PREDNISONE. Believe me I am grateful that it is able to assist with her count but the issue currently is that she has been on it 4 YEARS STRAIGHT. (CHANGED HEMATOLOGIST due to this) She's the mother of a 18 month old so she had to continue through the pregnancy. Prednisone has wreaked havoc on her body insomnia, weight gain, bruising, teeth falling out, bones popping and gum irritation. Not to say the least about her emotional/spiritual state. Recently in process of beginning new RX Promacta while weaning down mlg of Pred until off. Once accomplishe count plumetted to 7K ER visit and yet another hospital stay. Choose not to have spleenectomy. Placed back on Pred but followup still reflect 7k count want to readmit to hospital. She has a small child so chose not to be readmitted. Suggestions of how to proceed.

Mother of daughter with ITP. 7K 03/01/2012
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 7 months ago #22753 by Sandi
Replied by Sandi on topic Re: PREDNISONE DEPENDENT HELP
I was going to suggest Promacta or N-Plate, but see that she's already on Promacta. How long has she been on it? It can take time to see results. If that isn't working, she can try N-Plate.

What dose of Prednisone is she on? How are her symptoms with low counts?
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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13 years 7 months ago #22765 by karenr
Replied by karenr on topic Re: PREDNISONE DEPENDENT HELP
Hi Yaquala,

What do you mean by bones popping?
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13 years 7 months ago - 13 years 7 months ago #22769 by Yaquala
Replied by Yaquala on topic Re: PREDNISONE DEPENDENT HELP
Sandi, thanks for the reply she's been on Promacta a little over a month which is probably why it was being taken along with the prednisone. Currently on 60 mg Pred 50 mg Promacta. Symptoms @ Low count Mouth/gum bleed, awaken with bloody pillow, bruising and petechia.

Mother of daughter with ITP. 7K 03/01/2012
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13 years 7 months ago #22771 by Yaquala
Replied by Yaquala on topic Re: PREDNISONE DEPENDENT HELP
@Karen I guess "bones Popping" can be best explained as if you twist a knee or elbow and it makes a noise. But she can just be standing and I here a noise and ask if that was her and she will say yes. Wrist, ankle, knees I guess maybe even joints then.

Mother of daughter with ITP. 7K 03/01/2012
13 years 7 months ago #22831 by
Replied by on topic Re: PREDNISONE DEPENDENT HELP
FWIW: When I started taking Promacta a couple of years ago, four weeks on the 50mg dosage didn't get me above 14k.
My hematologist bumped it to the max 75mg/day dosage and my counts rose to the 40k-50k range over a couple more weeks time.
After a year, I was able to go back down to the 50mg/dosage and maintain 50k.
Everyone is different....but 50mg may not be enough to start the ball rolling for some.
It was not enough for me anyway.

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