pegylated interferon?

[Karol_Rua]

Hello all, I have ET since I was 27 (41 now) and JAK2+. In last year I have been on HU, as well as my usual aspirin and warfarin (I am high risk; had liver transplant in '06 due to clotted hepatic vein - last year the hepatic artery clotted).

Yesterday, I saw my amazing haematologist. She would like to try me on peg interferon as she feels its more suitable than HU at my age. Any experience of this - would like to hear about the side effects. HU going well for me, but recently my haemoglobin crashed and we dont know why. Its gradually climbing, but so are my platelets

[rebeccalub]

no side effects......take with confidence

[AndyT]

Hi Karol - I have been on Pegasys for about 4 months now - no side effects and it has brought my platelets down from over 1100 to about 350, so I am very pleased with it - just injecting once every 3 weeks now. Hope it works well for you too. Andy

[crapaud]

Hi Karol,

I'm glad to see that the two previous replies indicated no side effects; however this does depend on each persons personal reaction.

I was on Pegasys for 10 months (stopped to enable SCT) and had rashes at the injection site and headaches the day of injection. That being said I found these reactions fully supportable and wouldn't hesitate recommending if this is the best envisageable treatment for you.

I had a MF + MDS-u, but don't think this makes much difference to the side effects.

Best of luck in your choice.

Gary

[Karol_Rua]

thanks all for the reassurance! A little worried about my move from HU to peg interferon but longterm I think the HU side effects may be worse?!?! With me it's strange, my platelet count has been 'normal' since my first liver thrombus so we're looking at a platelet count that has reduced a little since beginning on HU, but hopefully aren't collecting as much in my spleen. . . hope that makes sense? My haematologist is working in the dark - assuming that my extra platelets don't circulate in my bloodstream but pool in my enlarged spleen. . .

Feeling good today - back on iron to boost my energy; apparently my blood counts are consequently rising too though

[wormwood]

Hi I'm 53 ET jak 2+. I did take HU but I'm now on non regulated interferon, self inject 3 times a week, and everything is fine, I do get tired...... But my accounts down from 803 to 348in quite a short time!!!!

Go for it ........ Wot have you got to lose.....

[wormwood]

That's meant to say regulated, bloody predictable lol

[wormwood]

It's done it again..... Pegylated.