Aranesp question

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• October 24, 2017 at 3:26 pm #34082
  Kathleen Kearns

  Participant

  I was diagnosed with RARS T and am having difficulty balancing my blood counts. The T in RARS T means I make too many platelets (1.6 million+), and I developed a bleeding disorder as a result. I take Jakafi to lower the platelets, but the medicine lowers my hgb. Right now my platelets are doing better, but I’ve been receiving Aranesp injections every 2 weeks to increase hgb. My question is how much is “normal” for the hgb to increase on Aranesp? My hgb ranges from 7.1 to 7.8, even with a higher dose of Aranesp. Is there anyone else on this site that is dealing with the balancing act of RARS T?

  November 4, 2017 at 7:12 pm #34391
  Marcia Briggs

  Participant

  I was diagnosed with MDS(RARS-T)/MPN. I too am having difficulty keeping the Hgb count above 8. I am on Jakafi and get procrit weekly…What is your dosage of Jakafi?

  November 5, 2017 at 4:13 pm #34394
  Kathleen Kearns

  Participant

  I take 25 mg, twice daily. I was receiving Procrit shots, but they weren’t working, so I started getting Aranesp shots. Have you been checked for acquired Von Willebrand disease?

  November 6, 2017 at 2:04 pm #34456
  Marcia Briggs

  Participant

  No.Is that a complication of our disease? Your query is the first mention of it..My docs seem to be going in the direction of reducing the dosage of Jakafi. I started out with 20mg. 2x daily…My new prescription is for 5 mg 2x daily

  November 7, 2017 at 2:09 pm #34466
  Kathleen Kearns

  Participant

  Acquired Von Willebrand disease can occur with elevated platelents. It’s a bleeding disorder. How long ago were you diagnosed? I’m so pleased to finally make a connection with someone else with RARS T. It’s so unusual and tricky to treat. What are your platelet levels?

  November 8, 2017 at 5:49 pm #34480
  Marcia Briggs

  Participant

  I was diagnosed in August 2017. At that time platelet level was over a million. On Jakafi levels have stayed between 500-750. My problem seems to be on low Hgb counts…today it is 7.8 when I received a procrit shot…

  November 14, 2017 at 11:35 am #34531
  Kathleen Kearns

  Participant

  Marcia, You’re on a pretty low dose of Jakafi, so that’s good that it’s able to keep your platelets down. I understand the frustration of the low hgb. I hate having to take a medicine (Aranesp) to counteract the effects of another medicine (Jakafi). When did you start getting Procrit shots? My dr. doesn’t seem to think the Aranesp is working, but wants me to continue as long os they’re covered by insurance. I started getting Procrit shots in January 2017, and then I switched to Aranesp in June, 2017.

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