MPN LIFE: COPING WITH THE TRANSITION FROM PV TO MF AND HYDREA TO PEG-INFN Jeremy Smith
Waking up July 3rd 2012 and finding out I transitioned form PV to MF was shocking. My hematologist had always stated he would know well in advance so we could be react to any changes. “ Not to worry.”
He also told me that INFN was ineffective in helping with MF. He was wrong on both accounts. He recommended we stop the Hydrea, which I was in full support. I asked what is the long term treatment course.
“ Wait and watch. Maybe bring Hydrea back and look at Incyte Jaffi product.” I waited a while and let him finish his recommendation. My Hematologist is very well respected and it took a lot for me to say something that I knew would be very contradictory to him and his colleagues views but I knew that there was only one drug treatment for me at this moment and it was PEG INFN.
So I said.” I hear what you have to say but unless you can tell me that Hydrea will reduce my fibrosis or that Incyte’s drug will I am going on INFN. ” At first he paused then he said “ Yes if you want me to make you sick and this is what you want I will follow your direction.”
The comments about making me sick bothered me because I heard them before. It was the same response in 2009 when I asked to switch then and earlier in 2007 when I talked about it then. So Stanford began the approval process which took sixty days and in the mean time
I met with Dr. Silver in who encouraged me to get on INFN right away. He was very specific in starting out with low dosages and long term staying no higher than 135MCG. He also explained to me that INFN is slow acting, something I never knew which gave me insight I had not been provided with.
Upon my return home I met with my Doctor and we started on PEG INFN Alpha 2. First 45MCG then slowly up to 90MCG and then finally 135MCG. Over time Dr. Silver and Mesa said we were seeing such good results we should switch the dosages weekly. One week 90MCG and one week 135MCG.
I have to say I feel healthier then I have ever felt on the INFN than I did on the Hydrea. No fatigue what so ever. I had no idea how the Hydrea was impacting me until I was finally off of it and it was out of my body. My only side effect is I had to raise the dosage of another medication I take slightly due to the INFN. But so far almost one year
In to this I have had zero issues with PEG-INFN. I don’t see the value of Hydrea anymore unless you have issues with INFN. Hydrea is highly toxic long term and it does nothing to slow down the progression of our diseases in fact it can be worse for your fibrosis.
Hope this helps some of you out there. Please let me know if you have any questions. firstname.lastname@example.org