Six months on Pegasys

[Paul123456]

I started Peg at 45 mcg weekly late March and built up slowly to around 80-90 mcg.

At last venesection mid March, my HB 135, RBC 6.32, Platelets 641 and WBC 10.95. My JAK2 Allele Burden was 75% and rising - was 55% when I was first dx Sept 2016.

Not had a venesection since.

Latest bloods HB 139, RBC 5.81, Platelets 280 and WBC 4.03. Even more impressive is that my rising JAK2 has declined to 66%.

I’ve had no Peg side effects.

Very pleased with Peg. I also have the TET2 mutation (around 15% of us PV’ers are also TET2) which is meant to inhibit the effectiveness of Peg/INF, albeit based on limited clinical data. (See recent post of mine). The TET2 mutation, as far as I understand it, increases inflammation thereby blocking Peg pathways. I follow an anti inflammatory diet so wondering if this compensates and hence my good response to Peg.

[bruddery]

That's great news Paul. It's always reassuring when you can actually start to see improvements in results! I'm just curious, what do you eat on an ant-inflammatory diet? Janice

[Paul123456 in reply to bruddery]

It’s pretty much Mediterranean Diet but with a few bells and whistles. Google search anti inflammatory foods and you will get a good list. Avoid refined/processed foods, oils aside from olive, sugar etc. Milk and cheese are inflammatory but need balance - I reduce rather than avoid. Still drinking my 25 units red wine per week regardless!

[bruddery in reply to Paul123456]

Sounds good. I'll check it up thanks Paul. Janice

[JohnSC]

Hi Paul,

I looks like you are getting great results with Pegasys which is very encouraging.

I hope it continues to get better and the Allelle Burden continues to drop.

I have recently started Pegasys but I haven’t had my Allele Burden checked. Is it something you Haematologist checks every time?

John

[Paul123456 in reply to JohnSC]

Many Hems don’t bother with AB since no direct link to progression. However it does appear to ‘load the dice’ in terms of gestation of other mutations.

I asked specifically for an updated AB test since I wanted to see whether the Peg was working for me on a molecular level despite my TET2 mutation. A reducing AB indicates yes and hopefully increases odds of an improvement in my fibrosity score (WHO 1). Means I won’t need a BMB for a while although I will be tempted in six months time to check what impact Peg has had on my marrow.

[lynxfluff]

That’s great to hear! Glad your numbers are looking so much better, and I hope you’re feeling that improvement too.

It’s comforting to read someone else with TET2 is getting good results. I start Friday, and I have JAK2, ASXL1, and TET2 mutations. Here’s hoping your good luck rubs off on us all. :3

[Paul123456]

Thanks lynxfluff

Have you read this article I posted last week

healthunlocked.com/api/redi...

Discusses impact of inflammation blocking the Pegasys pathways, hence hindering effectiveness of Peg. The article cites TET2 and smoking as specific causes of inflammation which may hinder Peg.

I’m wondering whether anyone on Peg/INF should try to lower their CRP (a blood test measuring inflammation) to as low as possible. My CRP is 0.24mc/L and to have low inflammation it needs to be below 1. I must stress that this is my pet theory and possibly completely batty!

Best wishes Paul

[JackLina]

Hi Paul

You lucky, lucky man. No side effects??? Jammy! I am on a great diet for the condition (always was, even before diagnosis) and lost so much weight due to virtually quitting alcohol. How do you manage to drink red wine? My reaction to that is almost immediate dehydration symptoms despite drinking around a gallon of water per day.

I think I must be experiencing your side effects as well. Hope it carries on. P

[Bluetop]

Those figures are looking good Paul -very glad it's working for you. Thanks also for the link to interesting article.

[Carolyn77]

Fantastic news that your results are so good Paul. Thank you so much for posting the link on interferon research. It sounds very promising and positive. Will toast you with a glass of red tonight. Hope for us all in the pipeline.

Carolyn