Pegasys- How long to see results?

[IrishSarah]

Hi gang, hope you’re all well!

I’ve had my 3rd dose of 90mg Pegasys (ET JAK2+) and curious to know how long it took others in the same boat to see results?

Sarah 💚

[Otterfield]

I was on Pegasys for a year, it took about six weeks to get going.

[IrishSarah in reply to Otterfield]

Thanks Otterfield 💚

[shiftzz]

To be honest, mine took around 18 months.

[IrishSarah in reply to shiftzz]

Thanks Shiftzz 🙂

[Helpatlast]

Peg by nature tends to be a long term med to take effect - some do get results within a few doses but the general is longer so it can be a waiting game - but worth it as it's such an effective treatment - it took a year or so for it to have the most significant effects on my platelet levels after slowly reducing a little at a time over that year - it's also finding the right dosage etc for you as an individual which your consultant will keep an eye on in coming months

[IrishSarah in reply to Helpatlast]

For sure! Eye on the prize 😉

[Katy121]

Hi Sarah, I had a response quickly on Pegasys - my platelet levels started to reduce when my bloods were taken after a month after starting. I have now been on it for 8 months and my platelets are just above normal levels. I was told my response was quick, and was told it can be much longer. It is a good drug and hopefully it will work for you.

[Hopetohelp in reply to Katy121]

Hi Katy121 can I ask what dosage you took and was it weekly. I am due to start mine this week

[Katy121 in reply to Hopetohelp]

Hi. I started and am still taking 45 mg per week.

[Hopetohelp in reply to Katy121]

Thank you

[IrishSarah in reply to Hopetohelp]

Best of luck with it Hopetohelp! I’ve started on 90mg weekly. I’d imagine your dosage will be recommended by your team based on your individual circumstances/history.

I saw you ask about side effects on another post, my experience was feeling pretty rough after dose 1 (kinda like flu followed by a bad hangover!) but improved on dose 2 and agin after 3rd.

Barely any body aches/pain this week, just pretty heavy fatigue and brain fog (took full week to shift in beginning, now seems to be easing off after 3-4 days). Took the good advice of others here to inject just before bed, take a couple of paracetamol and sleep off the worst of it and that’s working for me 👍🏻

[Hopetohelp in reply to IrishSarah]

Thank you for that info. Nurse showing me on Wednesday morning how to inject and there on after I intend to follow your advice and others and take it before bedtime. Will be starting on 45mg as I asked for lowest dose to start with. So pleased to hear it is working out for you. Must be a relief to have got started on positive medication. I am sure the thought before is worse than actually doing it so roll on Wednesday. Do let us know how you are getting on and hope your results are good. I will do the same

[freddie1234 in reply to IrishSarah]

Hi there. I'm currently taking hydroxycarbamide which I have been on for 15years, and unfortunately it seems to have stopped working for me. I'm starting pegasys soon and wondered how your treatment is progressing. I've read that it can cause hair loss, aging skin and depression . Do you have any of these side effects ?. I'm feeling rather nervous about pegasys as I've read such conflicting articles. Thank you and hope you're keeping well.

[Manouche in reply to freddie1234]

Hi Freddie, after 20 months or so of high dose weekly Pegasys injection I didn’t notice any hair loss, aging skin or depression, quite the opposite. Funny enough, I do feel 20 years younger. Everybody is different but you shouldn’t hesitate giving it a try.

[freddie1234 in reply to Manouche]

Hi Manouche. Thank you for your reply and wow! I shall be jumping for joy to feel 20 years younger like yourself. I'm only receiving positive replies so far and therefore feel much more confident in starting Pegasys. Best wishes

[IrishSarah in reply to freddie1234]

Hi Freddie,

I felt the same - excited at the possibilities Pegasys might offer and scared of the side effects. Two sides of the same coin!

I’m on week 9. None of the scary side effects to report! I’ve felt pretty rough after each injection, but it’s definitely eased as time has gone on.

It can be a bit random, bouts of nausea and smell sensitivity leading to low appetite one day, then eating like a horse with muscle/joint aches and pains the next.

The worst of it for me has been continued fatigue, but my doctors and I suspect I’ve still got long covid symptoms in the mix so it’s too early for me to draw conclusions.

For some reason I was most nervous about the risk of hair loss and depression, so I’ve kept a close eye on my mental health and I’m glad to say Pegasys hasn’t caused any issues there.

Bloods last week showed my platelet count had stabilised so keeping fingers crossed that it’s a trend!

Best of luck with the transition Freddie 💚

[freddie1234 in reply to IrishSarah]

Hi Sarah. Thank you so much for your encouraging reply. It's so helpful and comprehensive. Hopefully your fatigue is partly contributed to by the long covid, and this will soon clear. Good luck and Best wishes

[ciye in reply to Katy121]

My consultant keeps saying no to Pegasus due to covid, stay away from hospital ... I have had 2 lung surgeries in the last 7 months so don't see why that's a reason ... Do you self inject.

[Katy121 in reply to ciye]

Yes, I self inject. I saw the consultant once in May last year just before I started treatment and have had telephone consultations since then. I get 3 months supply of injections at once which I store in the fridge.

[IrishSarah in reply to ciye]

Hi Ciye,

Sorry to hear you’ve been through the mill, fingers crossed it won’t be much longer until we’re out of the worst of covid and outpatient services are better accessible for you 🤞🏻

I self inject, ice pack on my tummy for 10 minutes beforehand to numb and I barely feel a thing. I was on a course of heparin years ago so got over any fear of handling needles then!

Honestly it’s more psychological than painful, it’s an odd thing to ask your brain to intentionally “harm” yourself, especially if you know you’re going to feel a bit crummy afterwards with side effects.

The actual injecting part requires no expertise if you’re worried about that. Instructions in the pack are super clear and really easy to follow. Practice makes perfect!

Hope that helps 💚

[JojoWonder]

Hi Sarah,

Pegasys was slow acting for me to start off with. My platelets were a stubbornly high 1200. My Haematologist added in Hydroxy for 6 months to kick start things. I came off Hydroxy and have been taking Pegasys alone for around a year and a half. My platelets are a consistently in the 200’s now. I have read that it can be slow to get results but it’s worth the wait.

Best wishes,

Joanne

[IrishSarah in reply to JojoWonder]

Thrilled to hear you’re doing so well JoJo!

[DoubleF79]

Hi Sarah. I started Peg 90mg in December. Fortnightly dose had no effect so increased to weekly. Platelets also increased into 1600’s unfortunately. Upped dose to 135mg & 2 weeks in to that they dropped ever so slightly. Another 3 weeks and I’ll do my bloods ready for haematologist call 6/4. It’s good to know it can take a while to kick in so I’m hopeful it’ll work. All the best. Fiona x

[IrishSarah in reply to DoubleF79]

Yeah it’s definitely reassuring to hear isn’t it? Will be keeping fingers crossed for you Fiona 💚

[SuET2017]

Hi Sarah, I can’t remember exactly, but fairly quickly for me, as compared to above responses. It was certainly within a month or so that I was down within normal range. I did start on 90 but dropped to 45 after about 6 months, which is still maintaining normal levels for me. Hope it goes well. I tried all other treatment options with horrible side effects, and I experience much less on pegasys.

[IrishSarah in reply to SuET2017]

Great to hear it’s working for you Sue, and that you’ve been able to drop your dose

[MistyBlue2]

Hi Sarah,I’m one of the slow responders, I think.

I started at 45mcg weekly last June, went up to 90mcg in October , and now I’m on 135 (but am really struggling with this)

My counts have been coming down gradually, but I’d love a set of good readings to justify the cure side-effects.

[IrishSarah in reply to MistyBlue2]

Sorry to hear you’re having a rough time of it 💚It’s tough to keep trucking on when you’re constantly feeling crap, I went through months of that too post covid MistyBlue2 so can totally empathise.

I know the jury is still out, but I’m encouraged by the possibility of peg preventing progression or even regressing the disease. Eternal optimist here!🙂

[EleanorPV]

It's common not to note any change for the first year. My haematologist wanted me to increase my dosage, due to symptoms, I suggested - as it's slow acting to wait a year. that was when everything came into line and my FBC has been normal now for 4 years.

Good luck with your journey

[IrishSarah in reply to EleanorPV]

Fantastic to hear it’s delivering good counts for you for so long Eleanor! How have you found the side effects?

[EleanorPV in reply to IrishSarah]

I had side effects which I slept through for the first year. This was back in 2017. Since then I usually get very tired about 30mins after injecting. The overall improvement of my quality of life is huge.

[EleanorPV in reply to EleanorPV]

My fatigue improved hugely within 2 months of starting Pegasys (90mcg). I wasn't expecting that improvement which made it even more impressive. But this also corresponded with the time when I no longer needed weekly venesections.

[yarrowleaf]

Hi !! I went from 1800 down to a 400-500 in 1 month !!!!! Don't know if it went faster, but had bloodtests after 30 days and they showed the number.

It surely works fast and furious, in the beginning.

Best wishes to you

Yarrowleaf

[IrishSarah in reply to yarrowleaf]

Brilliant!

[ksos]

Hi Sarah: I started on Pegasys almost a year ago with a very low dose, increasing every three months. Now I'm on approx 65 mg (don't remember exactly). I saw impact on my numbers within the first four months -- although response is always individual . In addition, I have less fatigue, for which I'm very grateful. That's been a slow but steady change, and I'm hoping that continues to improve over time. I'm also on HU 500/day, although my doctor intends to move me off of that as long as my numbers stay solid. Kim

[IrishSarah in reply to ksos]

Fatigue is a killer 😩 Great to hear that’s improved for you Kim!

[Planti]

Hi, and thank you for posting this question. I have just had 4 weekly injections of 45ug for ET (Jak2+ diagnosed in 2020 and am age 66 and female) and having my next 2 weekly blood check tomorrow. So I have had only one blood check since starting.

I was on Hydroxyurea but stopped due to side effects. My platelets came down sharply on HU though it was only for one month. I was asked to wait until the platelets started to rise again and that took a month, but rise they did though not sharply.

My last 2 week blood platelet result after starting Pegasys was virtually the same as before starting. That was in the low 500s. My RBCs had been declining on HU and came down some more after starting Pegasys, but I did not know if that was due to Pegasys or delayed effects of HU. I know that red cells of course come down on Pegasys as it is a treatment for PV, but I thought that if your RBCs were not elevated due to being switched on abnormally as they would be if you have PV, that Pegasys would spare them. Hmmm, what do I know...

So can you please keep telling us about how things are going? I will let you know how tomorrow's blood draw goes.

Thanks for everyone posting how long, or not, it was until you got results. Goes to show us that we all have our own biology and therefore response to treatment varies, we need to know that!

And we still need to take the Qs and As back to our treatment teams. I do trust mine to give me the benefit of her experience even if I am an individual and therefore not predictable.

I am just so fortunate to have so far tolerated this extremely well.

Take care all, Lauren

[IrishSarah in reply to Planti]

Absolutely Lauren! Glad to hear you’re feeling well re:side effects 🙂

I always find it helpful to hear about the range of experiences everyone here has. Reassuring to know that even slow responses are “normal”, patience is not one of my virtues 😂

[Planti in reply to IrishSarah]

Patience greatly overrated sometimes!

My platelets did drop from 533 to 459, however that is within the range of some might say possible "normal fluctuation". But what the heck, it is in the right direction so I will take it! You might say that my head is hovering just above the sand.

Other blood work is normalizing too, mean cell volume had been up with HU now almost normal and monocytes now in range with only tiny downward movement of red cells.

If I was my doctor, I would be pleased. I am almost certain that when we talk in 2 days the verdict will be to leave the dose as is at 45ug every week and that is fine by me.

Time to store up a little gratitude for the lean days.

Hope your next results bring you some encouragement.

Best wishes, Lauren