No I quit smoking 12 years ago and have maintained my usual weight.

Hi Susan - I'm glad that you're feeling better now. I get short of breath when I exert myself because my red count and hemoglobin are low, though not exceptionally so. But that's not the case with ET, as I understand it. Is it possible that your ET is progressing to myelofibrosis? I hope you get an answer when you have your lab work done next month.
Best wishes,
Bruce

Hi Bruce, I stopped the Jakafi on the recommendation of the cardiologist. Between him, the pulmonologist, my Primary Care Physician and the hematologist/oncologist, none could figure out what was causing the shortness of breath. If it had been just mild over time, I wouldn't have been so concerned. But my primary care had me do a 6 minute walk test that showed my oxygen level dropped to 72 percent upon exertion, which is dangerously low. That's when the pulmonologist got involved. He couldn't find anything seriously wrong with my lungs and referred me to the cardiologist to make sure my heart was okay. Which it is, so he said stop the Jakafi and see what happens. He also talked to the hematologist about it. I have been off the Jakafi since the end of July and my breathing has improved, and I'm now doing pulmonary/cardio rehab. The hematologist said when I have my next lab work and visit with him the beginning of October, we'll see where my numbers are and then decide how we will proceed. I was on 2 weeks of prednisone for the itching and had prescription topical creams to use that helped. I no longer have the itching, and my breathing is getting much better. I also take Xarelto because when I was diagnosed with the ET, I had an aortic embolism in the spleen.

Unfortunately my entire upper body itches all over. This was not a here and there type of problem. However after two heavy doses of Prednisone over two weeks, and prescription topical anti itch creams, it has subsided. Also my shortness of breath has improved, but is still not back to normal. Yesterday was one month off the Jakafi. After my next blood work the doctor will check my numbers and then we will decide where to go from there.

As silly as it sounds when I get itching I use a hair dryer on warm and hot on the itchy parts of skin. It feels immense relief!!