Pegasus - how long to work

[Fivecatsandcounting]

Happy Christmas to everyone in this amazing group. For those taking it, I just wondered what your experience was when first taking Pegasus Interferon. I've had 15 doses of 90mg each week and my platelets are still high (last blood test as high as before I started interferon injections). Red and white also elevated. White only just though. Currently having 2 week bloods tests and awaiting an appointment with haemo which will now be in New Year. Is this normal? Has anyone else had this and if so how long did it take to reduce counts or did you need additional or change of drugs? My mind is working overtime at the moment 😜

[C2Cnext]

I don't think there is any 'normal' for the speed at which our bodies respond to Interferon. My body was quick to respond (a month), but my bone marrow was very proliferative with very high whites, nasty blasts etc. I was also on 90mcg weekly to start. From reading the posts here, I see the frequent advice to be patient with peg (some folk take a year to respond). Many also advocate low and slow with the dosage. You could have a conversation about increasing the dose with your MPN specialist but as I'm currently on a drug holiday from Peg because of worsening neuropathy (my dose was increased to alternating 135 and 90 weekly) I reckon slowly slowly catchee monkey is also a worthy approach. I will be requesting a lower dose if and when I try Peg in the New Year.

Good luck with the decision making

[NCB1983]

Hi fivecatsandcoubting, try not to worry. It took my platelets months to start responding to Pegasys. I started on weekly 45mcg, it got upped to 90mcg and then 180mcg and it was only when I’d been on the higher dose for a while that we started seeing a reduction. But when the reduction started it kept going until I was within normal ranges. Trying to think how long it took but it must’ve been 6-9 months. I too was concerned but my haematologist reassured me that it takes time in some people. Once within normal ranges, we lowered the dose to 135mcg and I’ve been on that dosage for ages and my body is used to it, with very few side effects from the meds. Good luck.

[Fivecatsandcounting in reply to NCB1983]

Thank you so much that's really good to know. I feel like I'm fighting to get an appointment with my local haematologist and am now a month past the promised follow up time and that doesn't help the scary fairies. Also trying to get definitive diagnosis which doesn't help. Prof Harrison suspects PV (I was so lucky to have an initial appointment with her). My BMB results were just given to me as 5 sheets paper confirming MPN and 25% JAK 2 but not which one it is. I was feeling frightened because my platelets are back up to almost 1300 and harm/red still higher than normal. It's reassuring to know that it could be slow to decline. I don't feel my hospital knows enough and that is so bad for my mind. This group helps me enormously and I really appreciate your feedback on this. Definitive diagnosis is so important so that I can be sure if what options are if this one fails. It's not my first cancer journey!

[NCB1983 in reply to Fivecatsandcounting]

It’s often an anxious journey towards a definitive diagnosis. Mine took a while too. Are you getting next gen sequencing (NGS)? That helped me to know what I was dealing with. Perhaps chase GP and hospital and Prof Harrison? Now I know what is going on, I’m able to live my life and not think bout it all the time. Before this point it was on my mind a lot. Now I just do my meds and have regular blood check ups. You’ll get there too x

[Fivecatsandcounting in reply to NCB1983]

I've never heard of that but I'll add it to my book of questions thank you X you're right. It's the not really knowing that is the worst. I can cope with anything once I know what is going on but the unknown and bot being able to get answers is awful and scary. It feels like no one really cares. I did email prof Harrison a couple of weeks ago with all my bloods and biopsy report to see if she could help me again but she must be so busy and I don't really know what the correct protocol is so not really expecting a reply. It helps to hear from others about how to cope and the responses to treatments. My mum died at 48 from misdiagnosed cancer and I was turned away by a doctor in 2000 as being too young .. turned out to be an aggressive breast cancer so all that adds to my anxiety of no care. I am actually a positive person usually! It's lovely of you to respond thank you for being there. Have a lovely Christmas x

[JSKly]

I too began with 90 mcg. It took a few months and a couple of venesections before we saw results. But then all was well I stayed on 90 for a few years and am just yesterday on 45. I would say be patient. It didn’t get magical fast results for me but it did come and has been great.

[Fivecatsandcounting in reply to JSKly]

Thank you! I need to hear this. I wish my haemo would tell me. You take care

[Audo_tt_boy]

I have ET and was stable at about 450 on 2500mg of hydroxide a day, started with 45mcg, for two weeks while reducing hydroxy to 1500 , then up to 90mcg for 4 weeks with 500mg a day, and then up to 135mcg with no hydroxy, numbers went up to 600 - 700 over the period and after about 3 months on the 135 things slowly started to come down, and levelled out about 300 after 4 months. We are all different and finding a regime that suits you is the main thing to do, but I think once peg starts to work you will see it goes on in one direction and the one that you want. Hopefully your numbers com back in to line soon

[sydunipete in reply to Audo_tt_boy]

I was very interested in your detailed response. I've been on Hydrea for over 10 years and my dose is currently 2000mg per day and my specialist is talking about changing me to Pegasys. Why did you make the change and how long were you on Hydrea?

[Audo_tt_boy in reply to sydunipete]

hi, I was only hydea for bout 18monhts … I was having terrible side effects with it, nausea and stomach issues, ulcers in mouth also which were very painful. They tired me on anagleride also , but I was not responding to treatment on this. As I was only 40 at the time and my wife and I wanted to keep trying for a baby, the obvious choice was peg . And we got my specialist to transfer me over. Symptoms burden is much less on the peg and on it now nearly 7 years… fingers crossed it will stay like this for years to come

[sydunipete in reply to Audo_tt_boy]

Well done. I’m hoping that Besremi (ropeg) will be approved for use in Australia soon. I believe that is even better than Pegasys. Good luck.

[ainslie]

15 doses isn’t much for Peg, I know of one person who was on 180 for 2 years before it controlled his reds, that’s probably a bit extreme , months or a year is not unusual

[Solyesh]

Before I started on my Peg journey for my ET, my MPN specialist warned me that it could take "quite a while" for us to get the dosage/timing right and/or for the desired effect on my bloodwork (specifically platelets and WBC) - and that I should not get discouraged if things haven't changed in 6 months - he was right on both accounts - it took us 8 months to get the dosing "right" and probably 6 months to start seeing positive results..but since that time things have remained within normal limits (after a decade on the high side for both WBC and platelets) and without side effects - these conditions are definitely marathons so hang in there

[Fivecatsandcounting in reply to Solyesh]

That's so encouraging thank you! This has helped me no end 🥰 I really appreciate it x

[Skyehope]

Hi. I had a similar post up recently. I've had 22 doses of interferon, starting at 45mcg, working up via 65, 90, and about to take my third 135mcg.

My counts haven't budged but after hearing the experiences of people in this group I feel more hopeful for the next few months and so I hope you can too.

I wish you the absolute best for positive results soon too.

Merry Christmas 😊

[Island-Lady]

15 doses is not that many with interferon.

I hope you are able to enjoy your holidays season and put worry in the background.

I have been on Pegasus for at least a year and have not achieved my goal yet, but I remain on a very very low dose because that works better for my body.

I feel so much better on the interferon than I did on hydroxy, so I am just going to keep going, and slowly increase.

Wishing you wonderful holidays and wonderful results

Warm aloha, Deborah

[Fivecatsandcounting in reply to Island-Lady]

This is so positive for me thank you! I am completely with your thoughts here. It's helped me to be patient. I wish my Haematologist could have given this reassurance that the group has wishing you a wonderful holiday too x

[RCBr]

I was on HU initially and it did not suit me at all...couldn't even go to work, so I started pegasys instead. I started on 90mg weekly and stopped the HU. Some would say that's a high dose to start on, but I continued on the same dose for over one and a half years, with the occasional venesection too. In the end I have reached the stage where I require no venesection, and my dose has reduced down to 65 weekly, with a view to reducing down further in the future x

[Fivecatsandcounting in reply to RCBr]

I'm so worried they will put me on HU. I had nasty chemo and radio therapy a few years ago and I just feel peg is the best thing for me and my body (and mind). Started straight on 90mg a week peg. Everyone's stories have really helped me. Patience and hopefully it will work. I will try and keep in this peg journey .. maybe ask for raised dose for a while until bloods stabilise. Thank you so much for taking time to reply X I wish you very well x

[RCBr in reply to Fivecatsandcounting]

It's definitely worth being patient with it....even though it's hard sometimes due to our health worries. I hope it's successful for you x good luck on your journey x