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@stevehurlburt

Hi all... I am 69 and was diagnosed with ET and some fibrosis so Early PMF with Jak2 about 3 years ago. I was on Hydrea 2x500 mg daily for three years and had great management of symptoms. Unfortunately I developed a cough. Numerous CT scans showed “ cloudy lung “. No idea what it actually is and three Oncologist “ believe” it is caused by Hydrea. No way to prove it. I am waiting on a pulmonologist to examine me this month. In the meantime, they suggested Jakafi or Pegysys Injections. I decided to switch to injections. What they do not tell you is Cost. Hydrea was about $20/mo ...Jakafi and Pegysys are both class 5 drugs and my out of pocket is close to $8000/Yr. interestingly, injections at the dr office are considered Medical Device and covered by Medicare A+B 100%. So to save $8000, I can drive to dr weekly. The rules are crazy and Dr certainly do not seem to care or understand when they recommend. Step carefully when dealing with Treatments for your Rare disorders and understand the details. Good luck...hope Hydrea works for you. Ps- just got my second BMBiopsy and it confirmed no progress...I await the results of the blood panel for 25 genetic markers. Be safe

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Replies to "Hi all... I am 69 and was diagnosed with ET and some fibrosis so Early PMF..."

Sorry the Hydrea did not work for you, stevehurlburt, I have been on it for
over two years with good results, except for continuing fatigue and red
pinpoint rash on my face, I have tried every cream possible cannot get rid
of it. Any suggestions for this problem.
I still cannot access the forum because my cookies do not support it so I
hope SOMEONE sees this post and comments. God bless all of you who are
going through the pains of any kind of blood cancer
.?....Claire39