Great progress on Pegasys!

[Minify]

I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 29%. Today it is 14%!

I was one of the folks who needed a higher dose of Peg to respond. Over 7 months, my dose was gradually increased, and I didn’t see a response until I was at 180mg/week. My blood work is now 100% normal and I have been able to reduce the dose to 90mg/week. I’ve not had any side effects to the Pegasys.

I feel great on the Pegasys, and all my ET related symptoms are gone, including the one that was most persistent - burning feet.

I did have a sub-massive PE after a long transatlantic flight, which occurred when my counts were at an all-time high, and right before the Pegasys kicked it at the 7 month mark. I’ve pretty much fully recovered from that, but I am on lifelong Eliquis and low dose Aspirin (these anticoagulants have different action and my docs recommend I take both). My highest counts, at the time of the PE and right before the Pegasys kicked in, were platelets 900K and Hct 47 - at that time I was getting therapeutic phlebotomies.

I writing this to let you know how grateful I am for the encouragement of others in this group, who helped me make the decision to switch from HU to Pegasys. It has, for me, been a life-changer.

[Yellowbike]

That is great! I have almost the same story although I for now stay on 180 mg.

Luckily I have no side effects and haven’t needed a phlebotomy in a year

[Minify in reply to Yellowbike]

I’ve often wondered how many of us needed to go to the full dose (180mg/wk). We seem to be in the minority, as so many get a response on very low dose.

[Indigo42916]

Congratulations, very impressive! I am a big fan of Pegasys, as it can be disease-modifying as your allele burden shows. I am 5 yrs. on Pegasys now just 45mcg once a month. It also resolved my erythromelalgia, which was very uncomfortable.

Take care.

[Minify in reply to Indigo42916]

so good to hear the success stories of others!

[Hopetohelp]

Great news! Thanks for letting us know. Patience is a virtue, as they say😂

[RoundTheWorld]

Hurray! Thanks for sharing your good news.

[Lyndjs]

So good to hear your news. I started Peginterferon and, like you needed to increase to the 180 dose before things started to improve. Last week was my first 'normal ' bloods result, after 7 months, still no venisection since starting too.

I am alternating weekly with 180 & 135. I guess next steps will be to find a maintenance dose. Please keeps us posted on your journey xx

I echo your comments on the forum support. Everyone is so kind and helpful, and there's a wealth of knowledge shared by very special people. I too am very grateful to you all.

Thanks again @ Minify 🥰 have a great summer xx

[Grapefruitlohoff]

Congrats! Glad to see it works well for you!

[BloodyMPNS]

Thank you Minify, I start mine today and am feeling very anxious about it so that is great to hear. Mel x

[Lyndjs in reply to BloodyMPNS]

I hope you're feeling OK, after your first. I was very anxious my first time. I was told to take 2 paracetamol 30 mins before. I'm not sure if it helped, but I'm still doing it now.

Keep us posted @BloodyMPNS xx

[BloodyMPNS in reply to Lyndjs]

Thank you I will do the same. Mel x

[Bluetop]

Thanks for sharing this -and showing you need to be patient with the drug. Good to hear you had no side effects too.

[Imkerin]

Very encouraging to hear this

[Exeter21]

brilliant results 👌

[Oscarsboy]

This is great to read your review. I m looking to change over about the beginning of October and have been sent home with reams of paper work from MPN to read. I have ET Jak 2, and have to say on reading the literature, some of the side effects have really concerned me, and its now making me question whether to remain on Hydroxy. It is very encouraging to read the success you have had with the change over, but I know it does not suit everyone either. Thankfully I have a couple of months in which to decide one way or another. I wonder is it more suitable to PV than ET patients, as I seem to see more PV patients on Peg interferon than I do ET patients. If there are any here who are on Peg with ET only, perhaps they would be kind engh to let me know of their experience too. Many thanks.

[Minify in reply to Oscarsboy]

Hi Oscarboy, My diagnosis is JAK-2 ET, but I suspect it was flirting toward PV as my Hct/Hbg were on the top edge of normal at diagnosis, and continued to rise until the Pegasys kicked in. I was on HU for 6 months before switching Pegasys. I did not like cutaneous changes I experienced on HU (dry skin, dry and thinning hair), and I had 2 basal cell carcinomas on HU. The skin cancer was the trigger for me to switch to Pegasys.

[Oscarsboy in reply to Minify]

Thank you for your reply. I certainly need to take all these thigs int consideration.

[Island-Lady in reply to Oscarsboy]

hi Oscarsboy. I like you have ET Jak2. I was on hydroxy for approximately two years and should have gotten off of it sooner since I did not realize that all of my symptoms were from the hydroxy. With the help of this wonderful website, I started on Pegasys two years ago. I started very low at 25 and gradually worked my way up to .50 which is where I am now. My allele burden went from 23.7 to 7.7 in a year. I feel better now than I have in years. The main difference I noticed was that I feel more ” like myself.” I wish you the very best and I am sure that you will make the right decision.

[ainslie]

congratulations 👍

[hunter5582]

That is great news! Glad to hear that you are doing so well. For many of us the PEG-IFNs are truly a blessing.

[SouthSideA]

Thank you for this update, and congratulations on this encouraging news. I, too, am switching from HU to interferon (in my case to Besremi, not Pegasus). May I ask how long it took for you to make this transition? I am titrating down on the HU and up on the Besremi. Did you follow a similar process?

[Minify in reply to SouthSideA]

Hi SouthSide A, I stopped the HU at the time I started Peg. My counts had been normalized by HU, and slowly rose over the 7 months I was titrating the Peg. My platelets and Hct were at an all-time high right before the Peg kicked in, requiring my first ever phlebotomy right before the Peg started working . Platelets 900, Hct 47. That was when I had the PE. I think titrating down on HU while titrating up the Peg is probably smart (as long as you are tolerating the HU). For me, I just wanted to get off the HU asap because of the skin cancer.

[SouthSideA in reply to Minify]

Thanks for this. What is a PE? I’m not familiar with the acronym.

[Minify in reply to SouthSideA]

SourhDideA—PE is Pulmonary embolus - blood clot in lungs. Very large one (category sub-massive). It happened right before the Peg kicked in, after a very long and stressful flight, and when my counts were at the highest. I was quite sick and nearly died. Thankfully fully recovered!

[SouthSideA in reply to Minify]

I’m so sorry to hear but so glad you came through it and the Pegasus is now working well. I’m hopeful I’ll have the same success without the complications along the way.

[Minify in reply to SouthSideA]

Good luck with your transition!!!

[SouthSideA]

Thank you, and thanks for your thoughtful replies.

[SouthSideA]

One other thing I meant to mention: I, too, am on Eliquis for life to prevent clotting. It’s good to know someone else who is on this drug.

[Solyesh]

Minify - great news! Peg has been great for me as well with all my counts WNL for the first time in a decade (after about 2 years on and off of Peg) - with no/minimal side effects as well.