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.

Hi @chocolategirl. I just found your post. I was sorry to hear you were feeling terrible. As time has passed, I'm hoping you are feeling somewhat better and your numbers are good? I have just asked the same question re Interferon. Only posted a few hours ago, so will be interested in any new responses. May I ask your age/age range? I am 60 yrs and as it's generally prescribed to a younger age group I am curious to know. How long have you been on Pegasys? I haven't started any treatment for ET yet but will no doubt be starting soon so I'm weighing up whether to start on Hydroxy or (Interferon) Pegasys. I will also check out the link from @loribmt. Thanks

Hi @kat260 - well since I posted the Pegasys started causing minor heart problems so the doctor switched me to Besremi. Less than a week after my first dose of Besremi I ended up in the Er with horrible AFib that hasn't seemed to let up. Since then I've had every test in the world and they found a clot in my jugular vein. So - doctor said no more Besremi; I guess my body doesn't like the interferons. I'm headed back to Hydroxy which wasn't much of an issue except it didn't do anything to fight my TP53 mutation. In answer to your question - I'm 67 and until last week was considered in extremely good shape as far as exercise, weight and diet. This week I can't even walk up a flight of stairs in my house without triggering my heart. I'm hoping this will all subside the longer away from the Besremi shot I get. I have been told that Pegasys is better at fighting cancer than Hydroxy but I've also seen posts of people who have been on Hydroxy for 15plus years and all was well. I really think it is up to how your body responds. Best wishes to you on the journey. It really is possible to lead a very normal life on these medicines for most people.

Hi @chocolategirl Gosh. That sounds awful and quite scary. I'm sorry you had to experience that. Quite unexpected too given the list of more common, less severe side affects. I'm surprised you developed a clot with the aspirin too. I'm in Australia and Besremi is not yet approved here so it'll be Pegasys or Hydroxy when I can decide which one to try first. A drug to fight the mutation of course is an advantage. I agree though, after reading yours and everyone else's experiences, I'll just have to choose and see how my body responds. Thanks for your wishes. I hope you have a speedy recovery and that you're able to return to your normal self as soon as possible. I admire your acceptance and ability to remain positive given all that you've been through. I hope I can muster up same if needed.

Thanks for your open and frank comments in regard to your experiences. My husband was on hydroxy for 7 years and was doing great until he started getting awfully painful cutaneous ulcers on his lower leg (apparently a side affect after taking hydroxy for that many years) He is not a diabetic and is in good health and was then in early 60’s.
That was 6 years ago now and unfortunately there is one ulcer that has still not healed. He was started on Pegasus when this all came to light but it took a while as I was checking this website etc, and found out this was maybe what was happening, We discussed this information with his haematologist who then transferred him onto Pegasus, but hadn’t really been aware of this side effect so I assume it is rare. He has been well since the change of medication, except for the ulcer, which has prevented him from swimming for a long long time😔 We are in Australia and Pegasus is the only option here for him.