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Promacta and blood thinners 1 month 2 weeks ago #70435

  • dneaphen@comcast.net
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I was diagnosed 7 years ago at 50 years old. Steroids splenectomy all unsuccessful. Spent the last two years or more on 20mg prednisone. Concerned about my blood sugar my hematologist put me on promacta a few months ago. I have to take the 75 mg lower doses were not getting my counts up. I am now fluctuating between 70 and 80. Very happy with that count. My problem is I have 2 blood disorders. So I have to take blood thinner as well. Ended up in hospital with a gi bleed. Usually if my platelets count is under 50 they hold my blood thinner to prevent this from happening. But this time I became anemic. My iron level is very low they are scheduling an iron infusion in a few days.
Is there anyone else that has to take both? Also wanted to know side effects anyone has a from promacta ? My feet and ankles don’t look like they belong to me lol very swollen and not sure if it’s promacta or the anemia ? Appreciate any helpful information.

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Promacta and blood thinners 1 month 2 weeks ago #70438

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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 have been on Eltrombopag for almost 4 years I have never had any side effects at all. Iron infusions can drop platelet counts.
After becoming anaemic (I had a spate of nosebleeds following my count plummeting due to an antibiotic) my consultant prescribed a course of iron tablets as she didn't want my count to drop any further.
The following user(s) said Thank You: Beaconshire1624

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Promacta and blood thinners 1 month 2 weeks ago #70441

  • dneaphen@comcast.net
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Thank you I’m hoping my iron levels go up with out the infusion

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Promacta and blood thinners 1 month 1 week ago #70513

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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1. Having been diagnosed with a pulmonary embolism two days ago, I am now on blood thinner Xaralto. I am also on Tavalisse and 7.5 mg of pred/day. I am worried about bleeding, although my platelets currently are high, 500+. I have wondered if the Tavalisse could have somehow triggered conditions that led to the blood clot, as I have always been considered a very low risk for blood clots. Nothing in the Tavalisse literature indicates that, however.
2. I was on Promacta for over two years, but, in November, when I was diagnosed with myelofibrosis--bone marrow cancer--I was taken off Promacta and offered Tavalisse. Myelofibrosis might be caused by Promacta. This is a very rare side-effect. However, it is one I am hoping happened, as if my myelofibrosis was caused by the Promacta, then it might be reversible. My hematologist (who is also now my oncologist) says I have some weird chromosomes that might mean the Promacta use and the myelofibrosis were coincidental. Since stopping the Promacta, my WBC has descended, so that gives me a little hope.

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Promacta and blood thinners 1 month 6 days ago #70527

  • ImPatient
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dneaphen- I don't have a blood thinner. My Promacta side effects: Super swollen ankles too. Loud cracking and hurting joints. Pain in sternum & spine. (It gets a lot better on days, where I don't take Promacta.) Diarrhea. Period stopped while 25mg daily and is coming back now that I keep lowering the dose (I'm 40). Maybe weight gain was partially (definitely not all) from Promacta, too, at least I'm 20kg over my normal weight and not able to lose any yet. (I know it says weight loss is more likely, not my experience.)

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Promacta and blood thinners 1 month 6 days ago #70528

  • ImPatient
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karenr- Sorry to read you got myelofibrosis & hopefully it is somehow reversible.

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Promacta and blood thinners 1 month 6 days ago #70533

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Sorry about myelofibrosis Karen

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Promacta and blood thinners 1 month 4 days ago #70549

  • MelA
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Karen I'm so sorry you are now having to deal with myelofibrosis, bless you!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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