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not liking this anymore.....

  • server
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  • newcreationchangingdaily
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12 years 3 months ago #39473 by server
not liking this anymore..... was created by server
I just want this all to stop. Going on 4 years of this ITP fun. Currently taking 100mg of Promacta a day. That's the max dose for someone with Hepatitis! Even with that dose my count went down to 6!!!!! OMG. So, a week of IVIG and counts up to 485. Ok, so guess I'm doing better right? NOT! I am still very, very fatigued. Just don't get it. Then of course there is the neuropathy pain. My hands hurt so bad that I have a constant frown on my face. Really, I have to put thought into what the expression on my face is. I'm tired.
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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  • 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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12 years 3 months ago #39475 by Sandi
Replied by Sandi on topic not liking this anymore.....
I know how it is, Gretchen. I'm not dealing with ITP right now, but I do have a multitude of other things going on. I don't usually go out of the house unless I have to. Socializing takes way too much energy. I wish I had some answers for you!

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12 years 3 months ago #39491 by Winnifred
Replied by Winnifred on topic not liking this anymore.....
Sounds like you have your plate full right now. Many of us have multiple health issues although not necessarily the same.

For me it is the treatments that I hate most, the more often I have a treatment the worse the side effects get. So even though I respond really well I suffer. I am currently using Rhogam (winrho) while I wait for a doctor who will fill out the proper paperwork so I can have Rituximab (rituxan).

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12 years 3 months ago #39502 by Kristine
Replied by Kristine on topic not liking this anymore.....
I know this won't help for right now, but it won't always be like this. I hope you feel better soon!!

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  • Melinda
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12 years 3 months ago #39511 by Melinda
Replied by Melinda on topic not liking this anymore.....
Did you get my email?

What are your symptoms now? The ITPers here used to get together, unfortunately that has stopped - but there someone who constantly had a count around 5k and seemed to do fine.

Neuropathy is a kick in the bum, a hard kick - and I'm sorry you are going through it too.

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Platelet Disorder Support Association

Platelet Disorder Support Association
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