Remission

[Aby1990]

Anyone of you in remission phase here?

[AndyT]

I’m in haematological remission - i.e. my counts are stable and I’m just on a very low maintenance dose of 45mcg of Pegasys once every 4 weeks.

Not sure about molecular remission as that’s not routinely tested in UK - I may give it another year or so and see if I can get it done privately..!

[Aby1990 in reply to AndyT]

How long have you been taking pegasys andy? And which mpn you had?

[AndyT in reply to Aby1990]

I have ET and have been on Pegasys for just over 4 years. Andy

[DJW1 in reply to AndyT]

Hi Andy, can you define what you mean by stable counts? What kind of numbers?

thanks, David.

[AndyT in reply to DJW1]

Hi David - my platelets range between 300 and 350, which is the key count for me - they were 1100+ before starting Pegasys.

Haemoglobin is in normal range, whereas red cells, white cells and neutrophils hover at or just below the bottom end of normal but not so low as to cause any problems.

Hope that helps.

Andy

[asacker in reply to AndyT]

I was in remission for about 7 years. No meds at all after about 30 years on Hydroxyurea. Sadly it didn't last forever but I'm still doing fine with treatment.

Good luck to you, Amanda

[Aby1990 in reply to asacker]

Meaning you got remission by using HU for 30years?

[DJW1 in reply to AndyT]

Interesting. I am in a similar situation but suffer from mf. I was diagnosed with it just over 1 1/2 years ago, and in the following 6 months my haemoglobin count fell from 110 to 81. The specialists started me on eprex, and my counts gradually rose to around 125-130 (this took about 6-8months. I have only had 1 injection of the drug in the last 5 months, and my counts are still around 130, the rest of my blood work is close to normal as well -platelets are about 400-425. The specialists have no idea why I am doing this well, but obviously I am happy to take it. Hopefully it lasts...

[Aby1990 in reply to DJW1]

Eprex.. first time hearing this name

[DJW1 in reply to Aby1990]

Hi Aby. Here is the definition:

Eprex® is synthetic erythropoietin (epoetin alfa) and is used to increase the production of red blood cells and decrease the need for transfusions of red blood cells. Epoetin alfa is produced naturally in the body, mostly by the kidneys.

[Aby1990 in reply to DJW1]

Thanks DJW1

[DJW1 in reply to Aby1990]

Cheers, Aby. It's expensive though, I am in Canada and if I had to pay for it would be hundreds of dollars an injection.

[Aby1990 in reply to DJW1]

How do you manage the expense?