Pegassis start

[cata]

Hello All

I'm 63 years old and I have polycythemia vera,the doctor suggested that after 13 years of hydrea to start treatment with pegassis. What do you think? Does it have side effects? What problems have you encountered in treatment with it? Thank you

[Spanelmad]

Have started on Peg this week after severe side effects on HU.Have experienced only a very mild itch , no headaches( but I've increased my water intake and reduced by tea). MPN voice has lots of info on the drug I found useful, regarding side effects.

[cata in reply to Spanelmad]

Thanks for the answer, also every two weeks is it administered?

[Spanelmad in reply to cata]

Your Heam will decide on frequency.But I'm taking 45mg fortnightly.

[cata in reply to Spanelmad]

Thanks

[Anag in reply to Spanelmad]

I had some skin itching the first time on Besremi. I took an antihistamine. Redness and itch was gone within a couple of days. The second injection there was less itching and bei the fourth there was no more itching. 🙂

[Anag in reply to Spanelmad]

I believe Peg is weekly to start. Besremi is every 2 weeks at first.

[Spanelmad in reply to Anag]

Well I believe every case is different and my dose was prescribed as fortnightly

[Anag in reply to Spanelmad]

Yes. The good doctors always look closely at their patients and at what works best for them! 🙂 we are all so different!

[Minify in reply to Spanelmad]

I switched from Hydroxyurea to Pegasys in March 2023. It took 7 months of slowly increasing doses to finally get a response (started at 45 every other week, then weekly doses of 45 , 67, 90, 135, 153, and finally 180/weekly. I did not respond to the lower doses as some on the forum have. But the low slow dosing allowed my body to adjust and I never had side effects from Pegasys other than a brief slight rise in liver enzymes after one of the dose increases. I feel better on Pegasys than I did on Hydroxyurea. I am still taking 180/week.

Just be aware that Pegasys takes time to work, and you don’t know ahead of time what dose you may end up needing.

I’m 72 and have ET. I’m active and healthy.

[Spanelmad in reply to Minify]

Can I ask what your platelet count was /is? My count is low at 488 but I've had bilateral pulmonary embolism.I was made aware it would take time to begin to work and will be really happy if everything keep going this way with regards to side effects.With Hu I had everthing.Glad your journey is going well.

[Minify in reply to Spanelmad]

My platelets ran 575-650 without treatment and my JAK-2 allele burden was 29% before Pegasys. I also have had a pulmonary embolus (bilateral, submassive), but thankfully completely recovered from that event.

[cata in reply to Minify]

Thanks

[cata in reply to Spanelmad]

PLT 286

[Spanelmad in reply to cata]

Wow!!! Looks like it's working well.Thanks for getting back to me.

[ainslie]

there is good info on the MPN voice website

[cata in reply to ainslie]

Thanks

[hunter5582]

My experience with using the interferons (Pegasys then Besremi) has been positive. Pegasys was more effective and much easier to tolerate than hydroxyurea or venesection-induced iron deficiency. The side effects have been minimal and easily managed on the lower doses that I used. I was using 45mcg/week of Pegasys. I am now on 175mcg of Besremi. Side effects have been itch/occasional rash (well controlled with cetirizine), elevation in LFTs (normalized with milk thistle extract), and mild lymphopenia/neutropenia.

I have been maintaining a complete hematologic response, needing a venesection less than 1x/year. As of December 2022 my JAK2 allele burden had reduced from 38% to 9%. I just retested last Friday and am waiting for the results. I am hoping to see the allele burden even lower. Hopefully, I will achieve a complete molecular remission.

Wishing you all the best.

[cata in reply to hunter5582]

Thanks

[Carol0925]

Hi, I started Pegasys yesterday, 45mcg fortnightly. I’ve had great support on here and MPN Voice. My Haematologist recommended Pegasys as it apparently has less side effects on the lower doses. I’m drinking lots of water as advised. Good luck.

[cata in reply to Carol0925]

Thanks

[Lyndjs]

Hi cata ,

I am new to peg too. I've had 4 injections so far, 45 weekly and I also have PV. I was given a choice and the forum helped me to choose peginterferon over Hydroxycarbamide. I have some bowel problems, so wasn't surprised it was affected, at the start. By my 4th injection things have really settled down 😊

My consultant told me to have paracetamol 30-45 mins before the injection as others have said it helps.

Hope you feel the benefit from the change. Please keep us updated. People on here have a wealth of experience and they have helped me.

[Wyebird in reply to Lyndjs]

Thrilled it’s working for you

[cata in reply to Lyndjs]

Thanks

[cata in reply to Lyndjs]

Thanks

[AndyT]

I’ve been on Pegasys for over 8 years and it has worked very well, with good control of my blood counts and very few side effects - just a bit of dry skin and itching but easily managed.

I’m now just on a low dose of 45mcg every 4 weeks, which is great and keeps my platelets under control without reducing my white cells too much.

Hope it works well for you too!

[cata in reply to AndyT]

Thanks

[Wyebird]

hi, after 6 yrs of Hydroxicarbomide and anagrelide I started peg. I love it. Yes flu like symptoms for 2 days at least every time I took an injection but the symptoms slowly diminished. You do not say how much medication you are on at present . I have ET. So very different.

It’s a decision you have to make I’m afraid.

[cata in reply to Wyebird]

Thanks

[Threelions]

Hi

I’ve been taking peg for a few years now. Started weekly and now I have a lower dose with longer intervals in between. Drinking plenty of water is the main thing to do. Side effects are ok & easily managed for most of us with a couple of paracetamol. Injection is pretty straightforward to do. Best of all it does a good job keeping blood in check.

Sure you’ll be fine. We’re all here to help if you need any👍

[cata in reply to Threelions]

Thanks

[Jamesxyz]

Hi,

Did the Hydrea stop working for you? What dose are you on?

Did Dr tell you why he's recomending the change?

Thanks

[cata in reply to Jamesxyz]

the doctor said that hydria acts on the effects of the disease and pegasis on the causes, unfortunately I didn't have time to ask, especially since as far as I remember the causes are not known, If you know more I'm happy to find out. Have a nice week

[Scarlett500]

I have ET and am on 45mcg a week and have been on it for about 5 mths. My platelets have dropped to 463 from 800 which my haematologist is pleased with. I have found adminstering the injections easy even though im really bad with needles. I do feel a bit tired the day after the injection but work at home that day but thats the only side effect.

[cata in reply to Scarlett500]

Thanks

[Wyebird in reply to Scarlett500]

Hi try an ice pack before the injection. It works wonders for me.

[Spanelmad in reply to Wyebird]

👍 tip

[cata]

Thanks

[LadyAbash]

Hi Cata,

I've been on pegasys 45mcg every fortnight for nearly 2years for my ET. The only side effect I suffered initially was feeling tired and lethargic when I injected in the morning. On advice from my haematologist, I now inject in the evening after my dinner. I sleep very well as a result on those days. Apart from that, I have had no other side effects.

Try not to worry too much about side effects because we all react differently. I panicked about side effects until I got into my stride with my injections.

Look forward to Christmas instead!🎄

LadyA

[cata in reply to LadyAbash]

thanks

[Wyebird in reply to LadyAbash]

Hi I noticed the side affects kick in a few hours after the injection so doing it about 5pm gave me more time to sleep off the affects