Start of Pegasus

[MDI55]

I have been on Hyrdrox for over a year and Mayo had me start switching to Pegasus three weeks ago. I am at low dose 2 mil and still taking my Hydrox 3 times a week. The first two shots I felt great and thought I found an answer but I took my third shot Sunday and went downhill fast with stomach pain, muscle and bone pain and overall feeling awful. Has anyone experienced this and does it subside with time?

[hunter5582]

I have not experienced anything like that on Pegasys nor on Besremi. As I am sure you are aware, the symptoms you list are possible side effects of Pegasys. Some do find that these side effects diminish as the body adjusts to the PEG. I would wonder about the possibility of some kind of combination effect from being on hydroxyurea and PEG at the same time.

You Mayo care team should have good insight into what is going on as well as the best plan moving forward. Please do let us know what you learn and how you get on.

[Yanks7]

MD155,

Very sorry to hear your shift in medications is not going as well as expected. Hopefully it is short term and due to transition overlap. I was wondering if you would be willing to share what reasons prompted your healthcare team to recommend a switch from HU to Pegasus.

[MDI55 in reply to Yanks7]

Mayo says Pegasus is now their first line of defense for ET as it has a better outcome and it is the only drug that has some ability to actually reverse the disease. My palettes were at the high 500’s and they want them under 400. They kept me on Hydrox while switching as they say it takes time for the Pegasus to kick in. The plan was to take me off Hydrox as the increased the Pegasus over time. Right now I am just on 2 mil but they where already suggesting going to 3.5. My last test this week had me at 524. Some docs are fine with me being in the 500’s but at 68 they say it gets riskier for me to be that high .

[Kelly2 in reply to MDI55]

Which Mayo clinic do you go to? And do you have to be physically present or they can see you by video calling?

[MDI55 in reply to Kelly2]

I am at the mayo in in Arizona and they do have call ins

[Yanks7]

Thank you for the quick reply, and best wishes with the transition. Please keep us posted on progress.

[Exeter21]

Too high dose to start probably I was similar but came off Hydroxy altogether & 3 month gap before starting peg on 45 weekly that was too much for me . Consulted MPN & reduced to 45 monthly . Been great on that doseage. Peg is low & slow. All my bloods now in range but taken 18 months experiment on doseage . It’s a good drug . Julia 👍

[dogsandhorses in reply to Exeter21]

Where are you, and what type of Dr. managed your transition off of Hydroxyurea?

[Exeter21]

Exeter Devon . I contacted an MPN consultant as local Haemotology had me on Hydroxy that made me feel so ill. I wanted a 2nd opinion.

Professor Harrison at Guys Hospital London gave me a phone consultation & approved Peg Interferon & oversaw the doseage when my body didn’t take to it due to headaches. Change of doseage done & now perfect don’t know I take it & feel like I did when fit. Julia 👍

[MDI55 in reply to Exeter21]

Thanks so much

[PhysAssist]

Hi MD155,

I had one weird episode of flu-like symptoms like you described, except that I seem to have an iron gut, so I almost never have abdominal pain, cramping, etc.

I did have bone and joint aches/pain, fatigue, lassitude, malaise etc.- generally felt like either a truck hit me, or I had been on the worst bar-crawling bender for a week before that.

It was weird because it wasn't at the beginning of my treatment with Besremi, and I don't recall it being right after a dose increase either. It was more than a few months into my up-titration, and I had given myself the injection on a Friday PM like usual, but when I woke up on Saturday AM, I felt as if I could barely lift my head.

Tylenol helped some, but time helped more, because by Sunday afternoon, I felt fine again.

It was also weird because I never ever had it happen again, and I've been at the maximum 500 mcg dose every 2 weeks for months/.

What I told myself [and believe] is that when these side-effects occur, it's a sign that you're efforts are having an effect- and it helped me to know that the goal is to fire up your immune system to defeat the mutants [stem cells].

Best always,

PA