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end of my rope.......

  • server
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  • newcreationchangingdaily
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12 years 3 weeks ago #40806 by server
end of my rope....... was created by server
I am so discouraged I can hardly stand it. It's been a little over 4 years since my fun with ITP started. STILL going for weekly CBC. Prednisone did nothing at all. Rituxan worked the first time but not the 2nd. NPlate worked, but the side effects were unbearable. Been on Promacta for a long time now. I've had to have a hysterectomy and nose surgery due to excessive bleeding. Currently at 100mg a day. That's the dosage for people with HepC. At that dose I also had my counts drop to 6. IVIG brought me up to over 500! Drop back to 75mg a day. When counts got below 140 went back up to 100mg/day Currently at 74. Not upset at all with that number but it's only been about a month and a half since the over 500. I'm about ready to give up and just live with stupid low numbers. That's all.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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12 years 3 weeks ago #40807 by eklein
Replied by eklein on topic end of my rope.......
Sorry you are having such a hard time!

Why are you staying on such a high dose of prednisone if it isn't keeping your counts up?
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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12 years 3 weeks ago #40808 by tamar
Replied by tamar on topic end of my rope.......
Hi Gretchen, Sorry to hear things have been so difficult.

Do you still have your spleen? If you do, this might be a time to consider a splenectomy.

Tamar

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 3 weeks ago #40812 by dru
Replied by dru on topic end of my rope.......
ITP can be so frustrating and depressing sometimes! You have really been on the rollercoaster lately with your counts. It is good to vent, hope you start feeling more able to cope very soon.
The following user(s) said Thank You: jeffrey71

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  • server
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12 years 3 weeks ago #40815 by server
Replied by server on topic end of my rope.......
Thank you for the support. It will eventually get better. Hope so anyway. Erica, I'm on 100mg of Promacta not Prednisone.
Tamar, I do still have my spleen. I believe there is a reason God gave it to me and I believe it is a necessary part of my body. I have family history of cancers and other autoimmune disorders. Another reason for me to want to keep it.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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  • 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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12 years 2 weeks ago #40848 by karenr
Replied by karenr on topic end of my rope.......
Gretchen, you mentioned you had nose surgery to counteract excessive bleeding. Can you tell me about this? Did a form of nose surgery stop nosebleeds?

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  • server
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11 years 11 months ago - 11 years 11 months ago #41404 by server
Replied by server on topic end of my rope.......
sorry it took me so long to reply Karenr, I don't always come here. I had to have nose surgery because I had a papilloma growing into the cartilage. It was causing the nose bleeds and the ITP were making them worse.


edit: update--nothing has changed. Still on 100mg of Promacta. Count on Wednesday was 20. Seriously considering just quitting it all and living with low counts!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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