VonWillebrand and Pegasys Interferon

[2017S]

Hi Everyone,

I recently saw a specialist in NYC. At the appointment they said I should remain on my baby aspirin a day and wouldn't need treatment until I was older for my ET (CALR+) (I am 41) This week they called back saying that my Von Willbrand factor was on the low end and wanted to start treatment right away with Pegasys Interferon. Has this happened to anyone else? What I have read is that your VonWillebrand factors can fluctuate up and down. I am confused if the Von Willebrand tends to make your blood unable to clot, wouldn't that be a good situation for my high platelet count?

My second question is about Pegasys Interferon. I have read that it can change your mood, anger and psychosis. Has anyone experienced this type of situation? This is the side-effect that scares me the most. I have read posts from Hep C patients that were on it and it was a living nightmare.

Please be honest.

Thanks so much!

[Paul123456]

Is your Von W. “acquired”? ie a result of your MPN. If so, it should improve as your Platelets come down in response to Pegasys.

I’m Von B. and on 60 mcg Peg weekly, no side effects. My understanding is that Hep C patients take a much larger dose. The max dose for MPN patients is about 180 mcg weekly. The trick with Pegasys is to start as low as possible (I started 45 mcg every two weeks) and build up.

How high are your Platelets? Hopefully you can get away with a low dose. The lower the dose the lower the risks/side effects.

Plus there is one camp of Hems who believe that low dose Peg (45 mcg per week) slows progression.

Best Paul

[Marossi]

Don’t worry too much about scary stories from Hepatitis C; as Pau123456 says they are on higher doses. I have a PV with high platelets and am currently on 135 mcg of Pegasys weekly (started off 90 mcg every two weeks and built it up gradually) and can honestly say I don’t suffer any side effects other than fatigue and some dizziness in the 48 hours following the injection. Everyone’s different of course but hopefully this is reassuring for you.

[Melaniem59]

Hi

I had the same thing last year with Von willebrand, it is linked to ET, higher platelets then lower vw

I see Claire Harrison at guys & was referred to st Thomas clotting centre & it was agreed that I can stay on just aspirin (after saying I would have to start treatment)

I would investigate a bit more before starting on treatment as it doesn’t seem it’s necessary just for the Von willebrand factor (it was suggested that it is understood that the two are linked & there was an over reaction)

Hope that helps

Melanie

[Ebot]

When I had ET (now rediagnosed as PV) I also had VW marked on my notes. This seemed to make no difference to treatment (aspirin only at that time). The only issue was potentially around any surgery. I too am under the team at Guy’s in London. I only started treatment - Hydroxy - when my platelets got to 1700.

[Mackydee123]

Hi there!

I’m 39, ET Jak2+. No issues with VonWillybrand but started Peg 6 weeks ago. Apart from some subtle symptoms I.e. feeling a bit dozy, temporary insomnia, tiredness and heart palpitations, all short lived, I’ve had no unpalatable symptoms and no mood changes. I’m still on 45mcg and my platelets dropped from 1073 to 800 in 4 weeks! I’m happy with it and the jab isn’t bad at all!

Hope this is helpful!

Kerry

[Gesha]

Hello

I am on pegasys for 8 weeks 45 mcg. No side effects. I have to go to Europe to get pegasys because American insurance companys won't pay for it. HU the first choice! And this is chemotherapy which I don't want.

Can you please provide me with your specialist name in New York? Maybe he can prescribe me also pegasys....

I am live in Indiana and ok to fly to NYC for...

Don't be afraid of Pegasus because it's much better choice then any other drug on the market!

Thanks and good luck

[ihavegotet]

I am on 90 mcg of peg a week and no problem. Evergone reacts differently. The mind is a strong thing as well. Just think positive and that you wont have those side effects. Start low dose so your body adapts. Best of luck.