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TOPIC: Feeling defeated - I want off this Roller Coaster

Feeling defeated - I want off this Roller Coaster 5 months 2 weeks ago #65675

  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
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I was diagnosed with ITP in April 2017 after a major bleeding event that sent me to the ER with a blood count of 4. Prior to this, I never had any issues though looking back I remember bruising easier than others but I played hard too...so who knows. Because of the way it was discovered I have this horrible fear of dropping at all. That being said, lately I am on a steady decline. I had 4 rounds of rituxan in fall of 2017 and it seemed to be holding me steady around the 70s. Every now and then I would go up or down but not by much. We have noticed that when I am off work my counts go up and during stressful weeks they go down. After Christmas I was at 98 and last week I dropped to 49. I am back up to 53 this week. I know these numbers are not horrible but I am stressing about it bad. I know the grieving process and I feel like I am going through it for my old lifestyle. I was in a lot of denial and then I accepted it and even have a pretty good sense of humor about it most of the time. However, lately I have developed a fair amount of anger, frustration, cynicism and the feeling of defeat. I find that when I drop I am exhausted and then I feel like I spend my weekends resting just so I can work all week. I know I am rambling. I am just looking for suggestions on how to handle this. I have a great support team in my family but bottom line is they don't have itp and they just don't understand some of it. I am hoping to find things to boost my energy or at least my mind set.
Thanks!
Mandy
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin
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Feeling defeated - I want off this Roller Coaster 5 months 1 week ago #65679

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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Mandy, a couple things come to mind. From earlier posts it sounds like you've got a good steroid response and not just a good IVIG response, but a strong one. Nice, congratulations.

One thing would be to talk to your hematologist and volunteer for a Dexamethasone 4 day Pulse. But counts are pretty good and doc may want a lower count.

The other thing would be to assume ITP is driven by residual Epstein Barr virus and try things that are good for EBV, like NAC supplement as described here. Note that a major symptom of EBV is feeling tired.

In any event. The Flu can make things worse. Might want to be sure you're getting enough Vitamin D as described here, and Folate / folic acid, to help keep the Flu monster away.

Hope this helps.
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Feeling defeated - I want off this Roller Coaster 5 months 1 week ago #65683

  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
  • Posts: 23
  • Thank you received: 3
Thanks so much Hal! I actually see me hematologist today and I will talk to him about other options. It is good to have this information!!!
I have been on a great vitamin that give me a lot of vitamin d, c, and folic acid. But it is good to know that is in the right direction! Thank you for your help and support!
Mandy
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin

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Feeling defeated - I want off this Roller Coaster 5 months 1 week ago #65694

  • johnmerrick
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make sure you are getting enough protein.
maybe add 25g of whey or egg protein.
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Feeling defeated - I want off this Roller Coaster 5 months 1 week ago #65695

  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
  • Posts: 23
  • Thank you received: 3
Thanks! I haven't been doing that...I will try to make a conscious effort to do that!
Mandy
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin

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Feeling defeated - I want off this Roller Coaster 5 months 1 week ago #65718

  • 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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It can be frustrating. I was on the roller coaster for 8 years. I used to do a mind trick that worked pretty well so I wouldn't worry. Whenever I got a new count, I would tell myself that that was the count I was until I was told differently. If I was at 53, I stayed at 53 in my head until the next CBC.

It gets easier in time. Once you realize that you can get counts up if need be, there really isn't anything to fear.
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