Peg reduction

[Wyebird]

hi all I’m just giving you a positive post about my Peg intake.

I cannot believe that is roughly two yrs since I started Peg and I’m still reducing my dose.

I started 90 units a week with 16 Hydroxicarbomide. ( I dropped the weekly 9 anagrelide)

It then went to weekly minus the Hydroxicarbomide.

Every 10 days, every 14 days, 17, 21,25, now I’m on 28 days. Not sure how it will work. A blood test in March will reveal all but currently my platelets are around 300.

In addition I’m now no longer prediabetic although only just.

I did do the prediabetic course and lost some weight but my sugar count did rise slightly. Now I’m wondering if the reduced Peg dose has influenced it.

So to all those not responding to Peg immediately. I do hope my results will give you hope.

Have a fab Christmas all.

[Anag]

I cannot tell you how emotional this makes me! Wonderful! Wonderful! Wonderful! Yes. I gives me hope and trust. The one thing about interferons is that even after you stop taking them, it could be that your platelets continue to fall for a while. I do see that your doctor is doing the reduction super carefully and is really timing the platelets reduction and interval of intake!

A Happy, Warm Christmas to you too! 😃

[hunter5582]

What wonderful news! Thank you for sharing a hopeful story.

Merry Christmas to you and yours. 🎅🎄🎁

[Spanelmad]

Best wishes to you and yours.

[Spanelmad]

Great to hear that the slow and steady approach can work.

[Wyebird]

haha it was me more than them. So often in the past my meds were increased I hated the thought of decreasing the dose and then increasing. Thank you

[Spanelmad in reply to Wyebird]

As my new mantra be more 'Hunter'!!

[lizzziep]

Great news!

[jointpain]

Well done, here's s hoping for a lovely Christmas for all, and for next year too. My wife may be taking interferon next year, but there was no talk of reducing the Anagrelide or hydroxycarbamide, but now through your post we will insist it's taken into account.

[Wyebird in reply to jointpain]

Oh yes I was on 16/17 hydroxi plus 9 anagrelide prior to Peg.

Wk 1 no anagrelide

Wk2 no hydroxi.

Good luck for your wife

[Mishie14]

Congratulations and thank you for sharing this very good news! It boosts my confidence in the slow and steady course I am on. Happy holidays to you and wishing continued good news for 2024. Stay safe!

[Meatloaf9]

Great news, Merry Christmas. Best always

[mhos61]

Fantastic news Wyebird. A great success story. Xx

[Hopetohelp]

wonderful news. Thanks for sharing

[AndyT]

Great news. That sounds quite similar to my experience.

I’ve just been on 45mcg every four weeks for several years and it keeps all my counts in line - platelets in the 300’s and red and white cells above minimum levels too.

[Wyebird in reply to AndyT]

Fantastic, I’m still aneamic and my whites are also just in the range but I’m way better than I was. I do hope it continues for you.

Merry Christmas

[PolyVera]

Wow that’s brilliant. I joined the site in 2019 and this is my first post. I was diagnosed with what they thought was PV but after a few months they said it was ET. I was put on 45mg of PegInterferon to start but was then changed to 90mg weekly. My readings were stable for a while and I decided 3 years ago to start having a longer gap between my injections. I did it slowly every 6 months kept making the gap larger. As of now I take 90mg of Peginterferon every 19 days. My specialist is fully aware of what I am doing and so far all my numbers are good. I intend to try to get to 21 days in the next 3 months if after my next blood test that everything is still good. I am B12 deficient and have to have injections every 3 months. I also take daily aspirin 75mg and take blood pressure medication. I have never had high blood pressure before I got ET so not sure if it could be linked. It took quite some time to be diagnosed and my doctor had not heard of ET. My symptoms were night sweats, a crawling feeling on my arms and legs. Couldn’t stand hot baths but now my numbers are stable I have it scorching. It’s been tough as my specialist initially said I could last 10 years but I’ve read on here people have had mpns for over 30 years. I do suffer now from anxiety a little but I think all this has happened because I couldn’t understand what was wrong with me. This website has been a great help and helps to know I’m not alone

[Wyebird in reply to PolyVera]

Gone to every 5weeks now🤩

[PolyVera]

That’s excellent, are you going to keep going until you see a shift in your blood results. My haematologist just left so I’ve got temporary specialists at the moment. At my last appointment he suggested having a weekly dose of 45. I refused because it’s a right carry on getting through customs when you take your needles with you. I liked the fact I can have a holiday without taking them with me

[Wyebird]

gosh why go weekly? Totally agree with you.