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Antiphospholipid Syndrome
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TOPIC: This Syndrome and Promacta usage

This Syndrome and Promacta usage 1 month 2 weeks ago #66281

  • Nomad
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  • Posts: 41
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I am extraordinarily upset.
I agree with you and appreciate you.
I got a second opinion and found the second person not much better.
She did agree Oromacta was a good Med for me. She did not know much about ITP and less about this syndrome and clots.
I am beside myself. I’ve been arguing with this doctor way too long. It’s embarassing and humiliating.
I had a count go up to 158. He said to drop my dosage to 25 mg. I did and my count went to 18. He freakin finally believes I need creative dosaging.
He put me on 37.5 to get the count back up a bit and then promptly left the country. Told me to see his associate who was clueless. She told me to stay on the 37.5 and see him the second he returns. I have some choice words for these people. I told her if I stay on 37.5 my count will go over 100 within a few days. She shrugged her shoulders. By the time I see him it will be 150. Rinse repeat.
She was angry...I think more at him than me. Who knows.
He has no desire to research this.
No desire to even reasonably experiment.
She certainly didn’t want his mess.
I see him in ten days.

I have an appt in May with yet another hematologist.
I thought the second doctor would be more of the same. I’m extremely upset.
I must fight for my safety.
If I see a hematologist at a teaching university...what is the long term protocol? I can’t druve several hours for each appointment?
Thank you.

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This Syndrome and Promacta usage 1 month 2 weeks ago #66284

  • Nomad
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Is my post here? I’m on my phone and it’s actung weird and can’t see all the posts. The problems continue. I got a second opinion. She wasn’t much help. Not knowledgeable. I’m facilating in the extremes.
He finally seem to agree that I need creative dosaging. Maybe skip days. Then he left the country and left me hanging.
I have an appt with another hematologist in May. I’m very upset. I will likely dose myself accordingly.
Thank you very much.
Please see my other post in the Promacta area regarding dosaging.

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