MATEs FORUM

Diagnosed in 2017 with ET + CALR & VW. Currently taking 1500mg of Hydrea a day to maintain a normal count. Seriously considering switching to Interferon. I'm a 38 year old female, healthy and seem to handle most medications well. Has anyone tried both? It seems like most people are on interferon. Interferon in the U.S. is very expensive so not sure if it is in Australia as well. Appreciate any input. Cheers.

Hey Zeppelin11...

Glad that you've found us here ...

Firstly, I believe that Interferon are now covered by the PBS in Australia, thanks to some pro-active lobbying by an MPN Patient some time back...

Secondly, there is a Dr Cecily Forsyth, who is located on the NSW Central Coast. However, it is my understanding that she has patients from all over Oz... There are seriously only a few MPN Specialists in Australia at present, & Cecily is an expert when it comes to Interferons... In my view...

Hopefully, some of the other MPNers here will chime in shortly... But all of them say that Dr Cecily is awesome, in their estimates...

Here's her website address for your convenience, should you wish to consider giving her a call etc:
https://www.centralcoasthaematology.com.au/

Once again Zeppelin, Welcome to MATES.

Hopefully, we'll be helpful for you & your MPN journey too...

Best wishes

Steve
MPN-MATE RF

PS. Oh, almost forgot to mention, please amke such that you Tick the Radio Box on the Top Left to Subscribe to your Posts, so that you receive notice of Replies etc...

Thank you so much for the information! I will check out her website and keep you all posted.

Hey Zeppelin11...

No problem... Hope you liked your new Avatar pic that I added for you too... (?) If not, there are a few others that you can choose if you prefer... Just let me know...

Best wishes w/ everything & do let me know if I can assist you further at anytime...

Best wishes...

Steve
MPN-MATE RF

Hi Zeppelin11,

My name is Katie and I too have ET. If it is any comfort to you, I was diagnosed 17 years ago and although I have had my ups and downs, I am still here!

I am a patient of Dr Cecily Forsyth and am on Peg Interferon. I took HU for many years but changed over due to a leg ulcer caused through the drug becoming toxic. My platelets kept increasing and I had to take large doses of HU which my body did not appreciate.

If you would like to have a chat at any time, Steve will give you my mobile number. I am more than happy to listen. I know you are young to have an MPN but you will learn to live with it and become more relaxed in time.

Best wishes,
Katie

Hi Zeppelin11

I’m Mark and have ET jak2+. I was diagnosed in September 2014 and have been on treatment for the last 6 years. 2 years on Hydrea and the last 4 on Pegasys. I’ve been under the care of Cecily the whole time and her team are a
Knowledgeable, great communicators and equally important great listeners. Pegasys has been a good fit for me with all my blood test results within range and whilst I have maintained the dosage of 90mcg per injection, I have able to push out the time between injections from weekly to now 5 weekly with a goal to go 6 weekly. All this had been under the guidance of Cecily and her team. I also use acupuncture and massage to assist in maintaining my body in the best condition possible. I hope this info helps.
Cheers
Mark