ET JAK2 Now Starting Peg Via IV?

[Mishie14]

First Hydroxyurea and horrible severe side effects overwhelmed me. Switched to Anagrelide with less intense side effects on low dose but upon dose increase triggered serious heart and liver effects. Stopped Anagrelide in December, have been off of ET drug since then. Side effects have gone away, including liver enzymes that climbed to 12X normal took 7 weeks to return to normal ranges. I have been feeling great but still have high platelets to contend with. Next step is to start Peg at 45 this week and then every two weeks for 6 weeks. Have anti-nausea and pain drugs lined up. The twist is the doctor ordered IV vs syringe injections so hospital called me to schedule an outpatient appointment . I am not sure about this. Anyone had Peg via IV? What was your experience? Thank you for info sharing.

***UPDATE*** My doctor had the order right all along and I am so thankful knowing that--it was the outpatient lab that got it wrong while setting up the appointment. As several noted, the first injection is usually for 'how to' education and having medical professionals engaged in case of adverse reaction. The lab supervisor called with an apology and confirmed the appointment correction. Also as some of you have noted, speak up and question what you don't understand. The professionals do make mistakes. This is a safe group to ask for help and encouragement. I very much appreciate having your support. It makes a positive difference along the MPN journey. 🙂

[hunter5582]

I have never heard of Pegasys being administered by IV. I do not see that it is available in that form anywhere. I would call to check on this to ensure there was not an error. If the doctor did order this, then I would want a very clear explanation of why a medication intended for subcutaneous injecting is being given in a different way.

It may be that there was some confusion in the message. The first time you take PEG it is a good idea to get instructions and take it in a medically supervised setting. This is precisely what I did.

Please do let us know what you learn.

[Mishie14 in reply to hunter5582]

thank you for confirming my suspicion. I await a return call from doctor. I did find one reference online med site that there is a powdered version of peg that is mixed with something at the infusion clinic for IV. It did not specify for what purpose, however. Granted this Medicine is used to treat several conditions so perhaps something other than ET is the intended use. My insurance pre-approval states subcutaneous form so there’s a disconnect. Appreciate your helping hand.

[hunter5582 in reply to Mishie14]

This sounds like a miscommunication. Your insurance would be very specific about what form of PEG they authorized. Please let us know how it turns out.

[Grum1]

I would be concerned with this order!

[Weasel2020]

Please just be cautious. My mom was on hydroxyuria ...and she had side effects, terrible...but she tolerated them because she felt it necessary.....1 year after she started the hydroxyuria, her oncologist doubled the dose...even though her bloodwork looked amazing (she had CML)....9 months later, at the age of 66 - she was dead. I'm certain that her oncologist made an error in her dosage (because 2 months before her death, she oncologist referred her to a new oncologist and was to be seen within 48 hours).....she never saw or spoke to my mother again after realizing her error. My mom loved her doctor....so, research, and ask a lot of questions....my mom never had the courage to speak up and ask questions...and she died for it. good luck to you xo

[Mishie14 in reply to Weasel2020]

Oh my, what a heartbreaking story. So sorry for your loss. I appreciate your sharing and reminding others about the perils of MPN. Remembering you and your mother in thoughts and prayers. Bless you.

[Oscarsboy in reply to Weasel2020]

Oh my goodness that is just dreadful, am so very sorry to hear what happened to your mum. It is a great reminder to us all to be very cautious if we instictively feel something is not right.

[Wyebird in reply to Weasel2020]

that’s really upsetting so sorry for your loss

[Hydranga18 in reply to Weasel2020]

so sorry for your loss… and how awful for your dear departed Mum. Yes.. we can all be to timid to question treatment side effects… Thank you for sharing .. it will help us all 🙏🏽

[AndyT]

I’ve never heard of Peg being administered IV - always by subcutaneous injection. Definitely worth querying what they have planned and why.

[Threelions]

Not heard of IV for Peg administration. It’s been a brilliant drug for me personally. Great results with very manageable & short term side effects. Good luck👍

[Hopetohelp]

Never heard of that. You are wise to question. Could the hospital visit be for the nurse to show you how to do the injection? Definitely sounds like a communication error to me. Please let us know how you get on

[Wyebird]

mine come fully loaded to 90. I think if on a lesser dose you squirt it out until the correct reading. All you have to do it attach the needle to the syringe.

Not sure about IV

I love my Peg. Good luck.