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Consequences of stopping Nplate treatment for ITP?
- amylynnet
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EDIT: MIL has not included other family members in the discussions she’s had (or hasn’t had) with her physician. I’m hoping this group can help me gather some information to better prepare us for the future.
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- CindyL
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- amylynnet
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- mrsb04
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- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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- midwest6708
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- ~ Janet ~ Diagnosed Sept. 2008
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Low platelets could make any bleeding that starts in the brain, stomach, or intestinal tract to become unstoppable; but that could happen even in the absence of ITP. The odds of having such a bleed are higher with old age, because the vessels are in a weaker state then than at younger ages; but low platelets alone don't usually precipitate a bleed. Does that make sense?
I'm 72. My ITP has never caused me any symptoms other than unprovoked bruising, petechiae, mild nose bleed, and mouth blood blisters at the very lowest counts. There have been times for me that low platelets didn't show any signs at all. I've never had a massive bleed of any kind, and never been hospitalized for the disease. When my count is above 20, I wouldn't be aware that I have ITP. For most people, there are signs that the count has become low. But unless massive bleeding begins, death would not be imminent or predictable.
I wish for her sake that someone could talk your mother-in-law into entering a hospice or palliative care program. My aunt is 93, in a clear and razor-sharp mental state. As of 10 weeks ago, she was still living independently and driving a car. Then she broke her hip and her heart condition has deteriorated to an insurmountable degree. She just made the hospice decision last week. It's not pleasant for her to know she's so close to the end of her days, but she is relieved that any suffering she's about to face will be supported by caring professionals looking out for her best interests. And she's most relieved that she won't have to shuttle back and forth to the hospital for futile treatments that won't improve her condition.
Wishing your MIL and all her family the best...
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- amylynnet
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Thanks so much for your kindness.
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- mrsb04
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- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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I am younger than her and when my counts are low can have horrendous nosebleeds that last at least 30 minutes and up to an hour on several occasions.
I was hospitalised before last Christmas with a mouthful of blood blisters and again in May expectorating fresh blood from my lungs for 2 hours.
amylynnet...I really feel for you and your family but if your MiL is of sound mind then she should be the one having conversations with doctors regarding what future care she chooses to receive. It isn't up to the family to make decisions on her behalf whilst ever she has mental capacity. All you as a family can do is respect her wishes and support her.
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- midwest6708
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- ~ Janet ~ Diagnosed Sept. 2008
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- amylynnet
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- mrsb04
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- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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"So in my opinion, low platelets alone are no guarantee of a fatal bleed." I completely agree.
ITP can be infuriating and unpredictable at times though.
amylynnet
"Our family is making progress in convincing my MIL to allow us to have a conversation with her doctors about all this:
I hope I did not offend you with my previous comments. That was not my intention but the sentence above could be construed as coercion.
I spent over 45 years as a front line nurse and dealt with death more times than I care to remember. So sad planning to lose a loved one but believe me caring for someone and ensuring they have a well managed, pain free, dignified death can be just as satisfying as caring for a patient and sending them home fit and well.
Both my parents and my husband had untimely and undignified deaths, which has caused me tremendous consternation over the years.
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- gozorakgogo
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- dmurashi09
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- Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
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I'm now tapering off of prednisone after 3 weeks (last 2 counts were 64K and 47K) and told my hematologist I no longer want to take steroids so I find your experience with Ritux and Nplate interesting. My hematologist doesn't like Ritux due to side effects. Nobody likes side effects, especially those that have to endure them, but I'm willing to take on those that come with TPO-RAs over those that come from corticosteroids. I have no symptoms, petechiae, or bruising when my counts are above ~30K (not exactly sure what level causes symptoms for me). My plan is to only do meds if my counts drop below that count.
Thanks for sharing your story and I hope you stay in med-free remission!
Derek
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