Getting no results with pegasys

[ggrana]

Hi I'm new to this post- I have et and pv and have been on Pegasys for 6 months with no change in blood counts. Has anyone had the same problem? Don't know if I should continue . Just found this blog and I'm excited to read all the stories that we share alike .

[Mazcd Partner MPNVoice]

Hello ggrana, welcome to our forum. I would discuss this with your haematologist or maybe your MPN nurse specialist, if you have one at your clinic. Kind regards, Maz

[BCsolves]

Ggrana

What size dose and what frequency?

It can take some patients up to 2 years to see blood counts normalize.

Has the LD changed...this has been said to be a marker of Disease progression if it increases.

Take care, Bryan & Linda, Barrie Ontario Canada, Linda is 67 yrs - Post ET(2004) - MF (High Risk / Advanced) 2011 Feb, CYT387 2011-2013(failed), Jakavi Nov 2013, Pegasys July 2014, Jakavi 15+15 mg daily + Pegasys 45 mcg weekly + Eprex 40,000 IU weekly March 2015 (9 weeks, then 6, then 4 due to 20+20 Jakavi, 15+15 = 7 weeks between transfusions so far vs. 3-4 weeks)

[ggrana in reply to BCsolves]

Hi thanks for the information! I started out on 45 mcg for one month then went to 90 another month then up to 135 and it's been three weeks I'mdoing the full dose of 180. My doc tells me to have patience but it's been six months and nothing has changed- it actually just went up last month and I had to go for a phlebotomy because my hct wet to 49. My platelets are at 1.6 million. I inject one a week. I don't know what LD is.

[ainslie in reply to ggrana]

For some Pegasys can work very quickly and others it can take 2 years, I know one person on another forum who was on 180mcg for two years before it controlled his counts. Some of the more adventurous haems (probably not in UK) are combining treatments ie Peg and Ruxo, in your case a combo of Peg and Hu might be an idea to keep your counts in line until the Peg starts to do its job. If you post your question on this list [e-mail] you will get more answers to your questions from people on Peg who were on it for ages for it to work and maybe some info n combo treatments. I don't know if any Uk docs are using combo treatments so your haem may dismiss the idea. Clair will know al about it of course. I think BCsolves meant LDH as opposed to LD, you can google it, its not really a very reliable marker , most people with MPN's have increased LDH, mine jumps around 250 to 500 , people with MF have higher maybe in thousands. On a positive note your lucky you can tolerate so much Peg.

[ggrana in reply to ainslie]

hi ainslie- thanks for your response and for all that great information. I'm in the US and my doctor wants me to stop the pegasys all together . I will mention about trying to combine it and see what he says . I'll also look up the website you gave me. Thanks again!

[ainslie in reply to ggrana]

your welcome, if you are in the US you should definitely join the forum I sent you, it is based in the US and the people on there all see the top haems in the US so know all the latest on everything, I think it would be invaluable for you to post your query on there and read their daily forum. Hopefully your haem knows best but not necessarily. Good luck