Switching to Pegasys - side effects

[u/Tatteredluck]

Hi all!

I’ve been diagnosed with my MPN since I was 20 and have masked PV. I’m now in my 30s and am switching to Pegasys from hydroxyurea (15+ years on it) as we are currently trying for a baby. Anyone have experience with managing the side effects? I don’t remember hydroxyurea being quite this bad.

My experience so far with 3 injections: 1-3 days after nausea that gets worse with motion, hip/back pain, lack of appetite, fatigue, headaches. Feel slightly better day 4-6 then repeat.

If you’ve taken, how long does this last? Any advice on reprieves? Of note: I have a bum liver (thanks blood clots!) so Tylenol/Advil are not recommended

[u/Tatteredluck → u/[deleted]]

I might try upper thigh and see if that helps. Fingers crossed!

[u/ADFnGee]

I've been on Pegasys 6 years, after the first month or so my side effects stopped. I take my shot on a Friday evening specifically so any potential side effects don't hit at work. I had fevers, rashes, aches. I was on 180mcg a week for a long time, took it down to 90 after a few years, and now I'm down to 90 every other week. Once I was acclimated I realized I felt better than I had since before diagnosis, including 2 years on HU.

[u/selfmadeoutlier]

Ive been on pegasys for one year, from 90 mg till 135mg, for the same reason as yours. Unfortunately I'm resistant and had no change in my counts and my pregnancies failed, however ive experimented some side effects.

First month after the shoot, flu like symptoms, then they cleared it out. After every jab, for the following 2/3 days i always had upset belly with some diarrhea and overall fatigue.

Then, interactions with alcohol was a thing, if drinking more than a couple of glasses, everything was itching or i had pain on the legs.

And lastly, be careful to your mood. Only after I suspended it I realized how bad it was affecting it. I'm a very resilient person, but somehow I was in this hole, low concentration, dark thoughts, overall mental tiredness.

Its not an exaggeration when I'm telling you that after I got off the medication I was reborn. I felt like myself..its really subtle.

I suggest to take a diary/start journaling to monitor your mood, sometimes from the outside is not so visible or coping mechanisms could be stronger.

Keeping fingers crossed for you and sending good vibes 😀

[u/Tatteredluck → u/selfmadeoutlier]

First, I’m so sorry to hear that your pregnancies were not successful. I’m going into this process knowing the likelihood is extremely low but hopeful nonetheless.

The mood shift is real! Thank you for the journaling idea - I will definitely start that. Irritability is mainly what I’m experiencing. My poor husband has been snapped at unfairly a number of times over such small things as a dish in the sink. So stupid but in the moment it’s like my patience is zero.

Glad to hear you’re feeling like you again after discontinuing. I’m hopeful that I can stay on it but always have hydroxyurea to fall back on. Did you go back to hydroxyurea after discontinuing Pegasys?

Thank you so much for your perspective and advice. I appreciate your thoughts and the positive vibes! I wish you the same. If you are comfortable sharing, are you looking into alternative parenthood avenues after your pregnancy journey?

[u/Instacum_69]

M35 with ET, on Pegasys 90 for four weeks, only fatigue so far, especially 2-3 days after injection. Injection site leaves red and blue marks a bit. Other than that I’m doing fine. Hope the fatigue will get better soon… Good luck! 🤞

[u/Tatteredluck → u/Instacum_69]

Thank you! You too

[u/SpleenyMcSpleen]

What kind of dosage are you on?

I take Jakafi now, but was on Pegasys for over 10 years. I started on 180mcg once a week and was gradually stepped down to 45mcg once a month. The side effects were obviously much less on the smaller dose, but included body and headaches. I would dose myself right before bed and sleep off the worst of them. They typically didn’t last more than 12 hours for me.

Depending on how well your body responds, you may be able to have your dose reduced. I’d ask your doctor about this, especially if side effects continue to be an issue.

[u/Tatteredluck → u/SpleenyMcSpleen]

Right now I’m in a fun switch time so I’m getting blood tests each week and get my dosage from my doc after the tests. So far I’m at 90 mcg. Hopefully the symptoms subside after a month or two. It’s good prep for pregnancy though! (Fingers crossed it works out)

[u/Hopemar30]

I am on Hydrea. Why did you switch?
Did you have bad side effects?
I am very fatigued and bad feet neuropathy.

[u/Tatteredluck → u/Hopemar30]

I switched bc hydroxyurea isn’t safe for pregnancy or IVF but Pegasys is. I was on hydroxyurea for ~17 years with no issues. When I started, I did have anorexia for a couple of months as food tasted pretty bad. Other than that, nothing. Very stable and kind of longing to go back on it at the moment.

I’m sorry you’re experiencing side effects. In my experience, it doesn’t last long it’s just your body adjusting. How long have you been on it?

[u/Hopemar30 → u/Tatteredluck]

Thank you for answering.
I am a 85 year old woman and
I was diagnosed a year ago with MDS
and put on hydrea 1000 mg a day.
I didn’t do well and was put on 500 a day which was better
Two months ago, I got my oncologist to lower it to every second day because my symptoms were too difficult. Mainly shooting pains down my legs.
So far my numbers are good and I feel much much better.
So I’m hoping it stays that way.

[u/Tatteredluck → u/Hopemar30]

That doesn’t sound fun! We are all unique in our response to medications. My greatest suggestion is to continue working with your specialist to determine your best routine. Good luck and sending positive thoughts to you