Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

Consequences of stopping Nplate treatment for ITP? 5 months 1 week ago #72591

  • amylynnet
  • Offline
  • Posts: 4
  • Thank you received: 0
My mother-in-law has been receiving weekly Nplate (romiplostim) treatments for ITP, and her count fluctuates between 30-45. She is 86 years old and also has Parkinson’s, which is progressing rapidly. She has made the conscious decision to stop Nplate treatments, with the intention of ending her suffering. We want to respect her wishes, but need to understand what she will be facing with this decision. How will stopping the Nplate treatment affect her overall health? Is there any prognosis on a timeline for when she may near end of life? What could the symptoms/issues look like (internal bleeding, stroke, etc.)?
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.

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 1 week ago #72592

  • CindyL
  • Offline
  • Posts: 1515
  • Karma: 1
  • Thank you received: 225
I'm surprised no one has replied yet.  I personally have not use Nplate, so can't help there.  But I would suggest discussing this with your MIL's doctor.
The following user(s) said Thank You: amylynnet

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 1 week ago #72593

  • amylynnet
  • Offline
  • Posts: 4
  • Thank you received: 0
Really appreciate your response! Unfortunately, my 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.

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 1 week ago #72594

  • mrsb04
  • Offline
  • 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.
  • Posts: 2077
  • Karma: 7
  • Thank you received: 596
Maybe contact the palliative care team. They will be able to assist the family prepare for the inevitable. No one can predict a timeline for end of life, each personal is an individual. 
The following user(s) said Thank You: amylynnet

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 1 week ago #72601

  • midwest6708
  • Offline
  • ~ Janet ~ Diagnosed Sept. 2008
  • Posts: 398
  • Karma: 2
  • Thank you received: 91
Amylynnet, as I read your questions, it appears you and your mother-in-law assume she will die when she stops her NPlate treatment.  That isn't at all a guarantee.  At her age, it's somewhat more likely than it would be if she were in her 40s, but it's still not a given.  

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... 
The following user(s) said Thank You: amylynnet

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 5 days ago #72605

  • amylynnet
  • Offline
  • Posts: 4
  • Thank you received: 0
I really appreciate you taking the time to give such a thorough and thoughtful reply. It is especially helpful to hear from someone with personal experience. Our family is making progress in convincing my MIL to allow us to have a conversation with her doctors about all this. Hopefully that will give us more facts to go on rather than the emotional turmoil of the unknown.

Thanks so much for your kindness.

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 5 days ago #72611

  • mrsb04
  • Offline
  • 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.
  • Posts: 2077
  • Karma: 7
  • Thank you received: 596
midwest is lucky that in her case  "low platelets alone don't usually precipitate a bleed"
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. 

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 3 days ago #72612

  • midwest6708
  • Offline
  • ~ Janet ~ Diagnosed Sept. 2008
  • Posts: 398
  • Karma: 2
  • Thank you received: 91
Mrsb, yes you're right.  I should have been clearer.  As I said, I've had relatively minor bleeds.  On other occasions at the same counts, I've had no bleeding signs at all.  That unpredictability is a common experience for many with ITP.  So in my opinion, low platelets alone are no guarantee of  a fatal bleed.  

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 3 days ago #72613

  • amylynnet
  • Offline
  • Posts: 4
  • Thank you received: 0
Appreciate your reply and the information you are shared—ITP is not to be taken lightly and your experiences bear witness to that. Just to clarify, we fully support my MILs  decision to stop her treatments. The intention of this post was to gather information in preparation for whatever is coming next. 

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 5 months 3 days ago #72614

  • mrsb04
  • Offline
  • 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.
  • Posts: 2077
  • Karma: 7
  • Thank you received: 596
midwest
"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. 

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 3 months 2 weeks ago #72703

  • gozorakgogo
  • Offline
  • Posts: 135
  • Thank you received: 18
I had a platelet level of 2 back in 2020 when ITP became a thing for me, out of nowhere, and put me in the hospital for 10 days. Ultimately, after failing to respond with prednisone, IVIG, platelet transfusions it was decided to give me 4 Ritux infusions along with weekly Nplate injections. I remained on Nplate, an injection each week, for three and a half months. My platelet levels had risen by then to well over 100 so I asked If I could discontinue the injections. My Hematologist agreed and it has now been nearly two years since my last injection. My platelet level has been near 200 for over a year. I am 56 but in my case there has been no negative experience having stopped the injections. It is my understanding that Nplate assists in the production of platelets within the bone marrow. In my case whatever triggered my ITP may very well have run its course and having done so my body is no longer in need of any assistance in stimulating platelet production. This is my case, will not be the same for everyone but thought I would pass along a positive Nplate cessation story
The following user(s) said Thank You: dmurashi09

Please Log in or Create an account to join the conversation.

Consequences of stopping Nplate treatment for ITP? 1 month 3 weeks ago #72822

  • dmurashi09
  • Offline
  • Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
  • Posts: 16
  • Thank you received: 2
ITP is such a strange thing.  Everyone's situation is unique.  I was hospitalized a little over a months ago for 5 days. My count was 2K which didn't surprise me after seeing blood spots on the inside of my mouth when I woke that day.  I responded well to IVIG and decadron with my count rising to 232K after just 5 days but it didn't last long and dropped back to 22K after only 10 days. I was first diagnosed in 2011 with ITP when a routine CBC showed my counts at 6K.  3 months of steroids and my counts returned to the ~200K range. That lasted 11 years with no meds.
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

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo