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10 years 6 months ago #47778 by mhardec
Information needed was created by mhardec
A close relative of mine (+70 yrs old) has been diagnosed with ITP. She has been in the hospital for 5 weeks now. We have gone through all the treatments (Ritoxan, IVIG, Splenectomy) and have started Promactin (IV and oral). Her counts have been 1 to 6 for the entire 6 weeks. She has been given countless platelet transfusions and blood transfusions. Hemo's continue to drop as well, down around 7. The doctors have stated that they have tried everything humanly possible.

For those who have been through this, what questions should we be asking? Who should we be talking to? Any advice would be welcomed.
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10 years 6 months ago - 10 years 6 months ago #47781 by Ann
Replied by Ann on topic Information needed
I'd imagine that you need to seek the advice of a haematologist who is experienced in treating ITP. Presumably your relative received the usual four infusions of Rituxan and now needs to wait several more weeks before saying that that has failed. Also a splenectomy in a 70 year old is always likely to fail so that is not surprising.

Not sure what the Promactin really is, especially IV. Have they tried Nplate? That would be another option which works for well over 80% of patients.

If nothing works then the diagnosis might be in doubt. Another opinion would be a good idea if at all possible.
The following user(s) said Thank You: mhardec
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10 years 6 months ago #47783 by mhardec
Replied by mhardec on topic Information needed
She has had 4 rounds of Rituxan, couple N-Plate treatments and Promacta was started a couple days ago. CBC was 2 this morning.
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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10 years 6 months ago #47786 by dru
Replied by dru on topic Information needed
With ITP It is not usual for hemoglobin to go down as well as platelets. Can you ask the doctors why they think her hemoglobin is so low? Have they ruled out other causes of low platelets besides ITP. Did she have a bone marrow biopsy? Five weeks is a very long time to be in the hospital. Is there a second opinion available where you are?
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10 years 6 months ago #47787 by Ann
Replied by Ann on topic Information needed
Nplate alone takes at least ten weeks to decide there's no response as the dose can be increased weekly ten times. So it seems to me that they aren't very familiar with ITP and how the drugs work. It would be usual to start with steroids and to try that for at least four weeks before saying it didn't work. There really has not been enough time to try all the drugs available in five weeks. You really do need another opinion.
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10 years 6 months ago #47788 by mhardec
Replied by mhardec on topic Information needed
She did have a bone marrow biopsy. Everything was fine there. They are sending to Mayo for a second opinion. They have stated several times (when we raised possible other causes of low platletes) that it is ITP.
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10 years 6 months ago #47789 by Ann
Replied by Ann on topic Information needed
That's good. You'll get good treatment at the Mayo I'm sure. I'm in the UK but have been here long enough to know that the Mayo is well respected.
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10 years 6 months ago #47790 by mhardec
Replied by mhardec on topic Information needed
The urgancy is that her platlets are so low (1-7) and that she is loosing blood.
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10 years 6 months ago #47792 by Ann
Replied by Ann on topic Information needed
Where is she losing blood from? The low count in itself is not a problem. Lots of us have had low counts like that and come to no harm. Losing blood may be a problem.
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10 years 6 months ago #47793 by mhardec
Replied by mhardec on topic Information needed
The doctors have stated that she is "oozing" blood internally. Evidenced by dark stool. Her hemoglobin’s are dropping too, which I guess is a sign as well. She has severe bruises and has bled some from the nose and mouth (nothing major)
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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10 years 6 months ago #47794 by dru
Replied by dru on topic Information needed
That is good that she will have a second opinion from Mayo. Hopefully they wil be able to find a treatment that works for her.
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10 years 6 months ago #47796 by Ann
Replied by Ann on topic Information needed
For acute bleeding like that my doctor would give platelet transfusions with factor VII to stop the bleeding. That second opinion from Mayo will help.
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10 years 6 months ago #47800 by tamar
Replied by tamar on topic Information needed
Has anyone mentioned MDS? When both platelets and red blood cells are low, especially in older patients, that is sometimes the cause. Dru is correct that ITP is ususally "just" low platelets.
  • 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 6 months ago #47802 by Sandi
Replied by Sandi on topic Information needed
A BMB should have ruled out MDS though.

I agree - N-Plate wasn't used long enough. Promacta can take time also. Does IVIG not work at all? What about steroids? Those are two treatments that could give quick results in this type of situation. The others may take time.

She does need a doctor who is experienced with ITP and isn't just treatment jumping. You won't get anywhere that way.
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