I had posted this as a reply to another post, but given that I was so able to directly affect my treatment plan only thanks to all of you and the great information and resources the community provides, thought I would re-post here as a thank you!
From HU to Pegasys...
I was about to pen a similar post but entitled "Leaving Hydroxyurea". I have ET Jak2+ and have been on HU now for about 5 months. We have been ratcheting up the dosage to better control my platelet count. Starting at 500mg/day had no issues and it did initially drop the platelets from 1.400 to mid 900's, but as we have continued to increase the dose, now at 1,500 mg/day, I have started to experience some unpleasant side effects. The major ones include a rash and itching on my arms that is so bad that even with antihistamines; anti-inflammatories and prescribed lotion/cream, I cannot get comfortable enough at night to get a good night's sleep. Fatigue, but honestly don't know if it is the drug or a side effect of the itching side effect and lack of solid sleep; nail discoloration (on all my nails on both hands); breathlessness when exercising (never happened before) and weight gain (but could be side effect of the breathlessness side effect which has begun to limit my ability to work out as intensively during my cardio)...
Even with all of this, if the medicine at the current dose had achieved it's goal I would have probably soldiered through for a little while longer to see if the SE moderated over time...unfortunately while the HU is very successfully dropping all my blood counts (Hematocrit and Hemoglobin, which have always been in the normal range, are now both lower than normal), my platelets, after initially dropping, have remained stubbornly at the mid 700s even after two months at 1,500mg daily.
My MPN specialist advanced my scheduled meeting by about three weeks to discuss things. He went through the blood results over time and basically agreed that unfortunately the HU wasn't yet performing as he had hoped. He laid out the three options: 1) continue on HU - up the dosage and try to better manage the SE to see if we can get platelets in range; 2) switch to Pegasys; 3) switch to Anagrelide. He also had an interesting take on the different specialist centers around the world and their proclivity for any of the three...
At the end of the day he said that as one of his most knowledgeable and up to date patients he would leave the decision to me (he actually wrote out the recommendation with the last line blank). He did tell me that he had a slight preference, for ease of administering and approval for Anagrelide, but that he would support my choice...
It was a very empowering moment and really only possible thanks to so many of you on this site who have time and time again provided such excellent knowledge and resources!!
I chose to move to Pegasys. He has to get approval from the Health authorities and insurance but he has done it before and thinks it will not be a problem. Should start at my next appointment at end of month.
At the end of the day, as many on here have said, we are all individuals and our disease as well as how we respond to the various treatments will be just as individual. The really good news is that we actually have options these days to try and find the right combination for each of us.
Question about Anagrelide treatment
New to PV and MPN Voice
Starting Interferon
Hydroxyurea break
