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Failing treatments for 86 yo with ITP

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10 years 5 months ago #48396 by agpdrh48
Failing treatments for 86 yo with ITP was created by agpdrh48
I am new to this site. My mom is 86. She acquired ITP from an allergic reaction to Coumadin 6 or 7 years ago. She was initially treated with corticosteroids. The SE are awful. She now has paper thin skin(great for bleeding), cataracts(great for her artwork) and bone density(had spinal surgery for degenerative disks). They put her on Rituxim and she became yellow with horrible N/V. Back to steroids. They tried NPlate, but she had itching so bad, that she went back on steroids. So, here we are. The NPlate and steroids keep her between 40,000 to 70,000. Off all, she dipped to 23,000 in a week. She is depressed. She wants to stop all and let her body decide. I can't say she is wrong, but it is sort of medical suicide. I wonder if anyone else saw a an ITPer have itching from NPlate or from lack of steroids. She blames the NPlate, but she is always coming off steroids when she is on NPlate..... Her doctor has mentioned her only other choice is having her spleen out, but from what I have read-86 year olds are not likely to see a difference. Any thoughts?
  • 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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10 years 5 months ago #48397 by Sandi
Replied by Sandi on topic Failing treatments for 86 yo with ITP
I suppose N-Plate could cause itching if one is allergic to any of the ingredients. Tapering Prednisone could also possibly cause itching because while someone is on it, it can reduce allergy symptoms and while going off, they can come back full force.

Has the doctor suggested Promacta? It works like N-Plate but may not cause the same side effects.

I can understand her depression about all of it. Sometimes the treatments can be harsh, especially for the elderly. Her doctor needs to keep trying to find something that works for her. Splenectomies rarely work for the elderly.
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10 years 5 months ago #48401 by Ann
Replied by Ann on topic Failing treatments for 86 yo with ITP
Have they considered CellCept or Imuran? One of those could help and would get her off the steroids.
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10 years 5 months ago #48407 by agpdrh48
Replied by agpdrh48 on topic Failing treatments for 86 yo with ITP
No they have only tried what I listed. Her doctor seems to have given up and she loves him and will never switch. He has come to not appreciate me, as I am always asking questions. I will ask him about your suggestions.
  • 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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10 years 5 months ago #48408 by Sandi
Replied by Sandi on topic Failing treatments for 86 yo with ITP
He should have never kept her on steroids for that long, especially at her age. I've been on Prednisone for a long time for a different autoimmune disorder and have some of the same problems - thin skin, breaking bones, and I've had the surgery for degenerative disks. I can relate. Tell her that she has a buddy!

A second opinion would be in her best interest. Maybe you can explain that things just might get a bit better if she tried to see someone else. At this point, it seems like she has nothing to lose.
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10 years 5 months ago - 10 years 5 months ago #48410 by NotADoc
Replied by NotADoc on topic Failing treatments for 86 yo with ITP
She should be depressed considering the courses of steroids she's been off and on. Obviously, she should be off the blood thinner. I would not give an 86-year-old steroids, especially prednisone. Steroids can temporarily boost platelet counts, but I've come to the conclusion it simply isn't worth it, given the side effects. I was put on Rituxan. It didn't work. I was urged to get a splenectomy, but wasn't convinced that it would work for me based on statistics and leave me either on a new diet of pills or prone to constant infection. I am on ProMacta now. Was started at the typical 50 mg dose, but suffered chest pains after 30 days (which seems to be a common symptom in older men after 30 days). Dosage now is reduced to 25 mg. Platelets are stabilized at 15 to 19K. I'm not worried about this. I am not depressed. I am not on steroids. I also am not a doctor, but a few raw carrots and a cup of kale a day seems to slightly elevate my counts. I have been tested twice a week for about a year because the docs think I'm going to bleed out and they don't want to be held responsible despite my assurances that they will not be. BTW, I know of quite a few people with far lower counts, who have led fairly normal, though exceedingly careful, lives for years. Tell mom to cheer up. She's probably got a ways to go and I think her philosophy just might work best for her. But I'm only 63 and have had this since at least 1996, so what do I know?