Peginterferon and platelets

[Lyndjs]

I started taking peginterferon 45 mg in November 2023 with a platelet count of 860. Since then, my bloods have been checked monthly, and my dose gradually increased. On Monday I will start 180 mg, alternating the dose weekly with 135 mg for a month, as my platelet count is now 665 and my Haematologist was hoping it would be lower.

I was wondering what others have experienced. I understand we are all different. Most reports I have read say peginterferon takes time and is a marathon, not a sprint. I would love to know of your experiences, please share.

[hall2]

Hi I’ve been on peg for several years now 90mcg every four weeks platelets are currently 240. It took a while for them to come down initially. You seem to be on a higher dose than normal so hopefully it will soon start to work and you can reduce the dose.

[Lyndjs in reply to hall2]

Thank you hall2

I'm hoping my platelets will continue to fall so I can reduce the dose. Great to hear your experience, gives me hope x

Thank you for your reply xx

[NCB1983]

It took over a year for mine to come down, I started on 45mcg weekly and this got quite quickly upped to 90, then 180. I was on 180 for ages and when we hit normal ranges we switched it to 135mcg. I’ve been on 135mcg for a few years now

Sounds like your haematologist is being impatient! Are they an MPN specialist?

Good luck!

[Lyndjs in reply to NCB1983]

HI NCB1983

Thank you for sharing your experience. I did ask my haematologist about seeing a MPN specialist but he has said, he's consulting with Claire @ Guys in London, on my care. My next face to face app, is in 4 weeks.

It's reassuring to know, your doses were quite quickly raised too. I'm hoping to use experiences of others when discussing my care/ next steps. I'm very happy to hear your levels are in normal ranges and your dose has dropped too.

Thank you again, for taking time to reply and sharing your journey.

Enjoy the bank holiday,

Lynd x

[Solyesh]

Been on Peg for about two years now - started at 180mcg every two weeks which quickly dropped my platelets but impacted my liver enzyme readings - so had to take a 6 week break. Came back on at half that dose 90 mcg/every two weeks and have been on that steady for about a year now. Platelets dropped on that dose but slowly - last bloods all my readings were within normal limits for the first time in probably a decade. You said it best in your original post - this is a marathon not a sprint and it can take time for the Peg to fully work.

[Lyndjs in reply to Solyesh]

Thank you for sharing Solyesh I just wanted to know the experiences of others, ready for my chat with my consultant. I appreciate you sharing your experience of your platelets dropping slowly too. So great to hear you're now within normal limits 😊

Again, thank you for taking the time to share x

Lx

[plum27]

I have been taking pegasys for several years now, after a few years on hydroxyurea initially after diagnosis. I didn't tolerate the hyrdoxyurea very well, which motivated the change. I started on 60mcg/week of pegasys. Initial reaction was quite strong with aching legs and flu like symptoms: fatigue, headache, aching legs and more generally. After a few months, the side effects of hydroxyurea and pegasys both started to decrease. After about six months I was starting to feel better and after a year, much better. My blood results improved fairly promptly, then gradually over following months. For example, I was having venesection every few months before starting pegasys but I think only once since. They are mostly all normal range now, except for low white cell counts. It was a bit unpleasant initially but I am very pleased that I persisted with pegasys.

[Lyndjs in reply to plum27]

Hi plum27 ,

Thank you for sharing your experience. I've not needed a venesection since starting peg, I've been close but never crossed .45. Great to hear your results improved,I really hope your WBC improves too.

Really appreciate you sharing your journey, thank you.

Lx

[Minify]

It took 7 months for my platelets to start decreasing on Pegasys. I started low at 45 every other week, then increased to 45 every week. From there the titration steps every 4 weeks were 45, 60, 90, 135, 153, and finally 180. Blood draws every two weeks during titration phase. I never had a side effect from the interferon, and only had a very brief small rise in liver enzymes, which returned to normal by the next blood draw. My labs finally responded at 180 and I’ve had perfect counts for the last 7 months on that dose. I think we’ll start to titrate to a lower dose with my next appointment. I feel very good at the 180 dose.

[Lyndjs in reply to Minify]

Hi Minify ,

Thank you for sharing your experience. It is so reassuring to know the 180 worked for you, and you felt OK on the dose too.

So happy to hear your counts are stable now.

Thanks again for sharing xx

[Island-Lady]

as you said, we are all different. It took me a year and a half on Pegasys to finally have my platelets start to lower. They are now down to 600,000 which my oncologist and I are happy with. I just had a blood test a few days ago, so hopefully they are even lower now. I started on an extremely low-dose of 0.25, which I stayed on for quite some time, and I very very slowly increased the dose. I am now on 0.45, which seems to be a good dose for me. I inject this every other week and I feel the best I have felt in years. With all of the good things that I have heard about Claire Harrison on this website, I think you are lucky that your oncologist is consulting with her. I wish you the very, very best.

[Lyndjs in reply to Island-Lady]

Hi Island-Lady

Great to hear you are feeling so well, it gives everyone hope to read your post x

I was surprised, when I asked, my consultant if I should see a MPN specialist, and he told me he'd consulted with Claire. He does seem genuinely very interested in my condition and shares research with me, at my face to face app, which are every 4 months. Every month, I have blood test and a haematologist call to discuss, how I'm feelings, share my test result and med changes, as directed by my consultant. So I feel confident I'm being well looked after. I was just anxious about the high levels and slow platelet drops. I really want to continue with Peg so, I wanted to hear from you and others, so I can share experiences of those living with an MPN and taking Peg. I was very interested to hear your platelet count, as I'd wondered what a good count is with an MPN, it was on my list if questions for my consultant.

Again, thank you for sharing your experience. It's great to hear you're doing so well 🥰

Lx

[Island-Lady in reply to Lyndjs]

Also I forgot to mention that in less than a year on Pegasys my allele burden went down from 23% to 7.7% it sounds like you were under excellent care and I wish you wonderful results from Pegasys!

[Lyndjs in reply to Island-Lady]

Wow! What a fantastic drop in your allele burden. You must have been very pleasantly surprised and happy.

This is the reason I want to stay on Peg too. I have read nhs don't retest allele burden, but my consultant has agreed to do retest, phew x

Thank you fir sharing and giving us all hope xx