Anyone have ET and on Pegasys instead of Hydroxyurea?

Hi @chocolategirl. While you’re waiting for others share their experience with Pegasys (Peginterferon alfa-2a), I did a little search for discussions mentioning Pegasys for you. Here’s one of the links to a conversation that might be helpful.
https://connect.mayoclinic.org/discussion/new-to-pegasus-advice-please/
I’m sorry to hear you’re feeling so miserable on the Pegasys. Are your liver enzymes improving with the lower frequency of the Pegasys injections? Were there signs the ET was progressing while taking the Hydroxyurea?

@loribmt
Thanks for the link - so kind of you. And yes, my liver enzymes were ok after the switch to 4 weeks for the first time in 5 months. My ET wasn't necessarily progressing but my TP53 mutation went from 30% mutated to 67% in just a few months. Making the switch was to help prevent progression since the TP53 genes is the guardian gene that protects against cancer.

Hi @chocolategirl. I’m sure you and your doctor were relieved to see your liver numbers back to normal after adjusting the treatment schedule. Hopefully your side effects will also start subsiding. Sometimes it can take a little tweaking to get the dosages just right…the happy balance. How often do you have labs?

Hello @loribmt - I have labs every 4 weeks. I am going tomorrow so we'll see what's up. There have been times over the past 2 years when I have felt great for long periods of time but my blood work didn't look so good, so it's a little disheartening to not feel good and my blood says I should be ok. I expected it to take a while to get the balance right between strong enough to kill the bad stuff in my blood and not too strong that the side effects made me miserable. I'm sure we'll get there. The hard part is like I've seen on other posts - the doctors seem to think with ET that our symptoms should go away once we're on meds and I felt kinda crazy when they didn't.

Hoping you get used to the peg. Docs seem much better at dosing than they were at first. Several years ago, when the drug first came out, people were starting on high doses and getting very discouraged.

Interested in yr doc's choice to use peg instead of besremi. As I understood it, besremi is latest generation treatment, fewer side effects than peg. Does peg work better for your gene mutations? I am on hydroxyurea, so no first-hand knowledge here. Not trying to second guess yr doc's choices, but to us lay people, these decisions sometimes seem a little opaque. Thx!

@chocolategirl
Hi there chocolategirl, hang in there. It is very hard when the docs think that your symptoms should just go away once you're on meds. It just is. When we feel bad, we are looking to people we trust to validate us and accept what we are saying about how we are feeling as truth, not something to be doubted. Unfortunately, whether these people are docs or family members, they often fail us in this regard. They either don't get it, or they are misinformed. That does not mean they are 'bad'. They just don't know. So, it comes down to trusting what you are feeling and taking that into account. Remember, everyone is different. Even if 99 percent of the people did well on a drug, does not mean that you will or have to as well. Docs who make you think that your symptoms 'should' be gone once you are taking the drug that they prescribe, so if you are still feeling them, well, what does that say about you???? and then you feel gaslighted ---think again. No better time to start validating your own feelings then the present. Your feelings don't lie. You are feeling what you are feeling.