419 total results
Comments (384)
Yes . I had this for 10 1/2 years and used same medication until it no...
https://connect.mayoclinic.org/comment/50532/
Hi Nellieblue, My husband has been on Tamsulosin for his Myelofibrosis two capsules a day for...
https://connect.mayoclinic.org/comment/101841/
Hi @bmarkable. I believe the medication Dr. Tefferi was talking about in the video is Imetelstat....
https://connect.mayoclinic.org/comment/1257278/
I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets...
https://connect.mayoclinic.org/comment/910025/
Hello @ettap and welcome to Connect. It is good to see that you have confirmed your...
https://connect.mayoclinic.org/comment/194256/
Hi circawdm, I would agree with what you said if one has ET. My O/H told...
https://connect.mayoclinic.org/comment/1316170/
I don't recall if you mentioned using NAC or glutathione. Individually they offer important benefits. Together,...
https://connect.mayoclinic.org/comment/132659/
@scottmatteo I, too, have myelofibrosis. diagnosed by Mayo almost 6 years ago. But at that time,...
https://connect.mayoclinic.org/comment/657916/
I am beginning to think my mom had this and no one told us. She lived...
https://connect.mayoclinic.org/comment/926244/
Hi, I agree that the whole person approach is better. I finally have a decent primary...
https://connect.mayoclinic.org/comment/1275734/
Hi Steve My case is similar to yours. I was treated with Hydroxyurea for7 yrs for...
https://connect.mayoclinic.org/comment/913626/
I think in the United States some insurance companies make you do step therapy…hydroxyurea first before...
https://connect.mayoclinic.org/comment/790422/
@ettap , Great comment. Most importantly, because it pertains to me, as well!(!) Anyway, I have...
https://connect.mayoclinic.org/comment/652790/
I'm extremely grateful that they have a better diagnostic system now, and even more grateful that...
https://connect.mayoclinic.org/comment/892932/
My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A...
https://connect.mayoclinic.org/comment/693147/
Welcome to Connect, @tamijulien. At this time, a stem cell transplant remains the only possibility for...
https://connect.mayoclinic.org/comment/1103793/
Thank you, Lori, for your response and suggestions. It’s so gratifying and comforting to now be...
https://connect.mayoclinic.org/comment/1253226/
@loribmt you are so helpful. Thank you for the information. It certainly seems a small thing...
https://connect.mayoclinic.org/comment/1370870/
Hi withhope, I am very sorry you have had such a bad experience with all that....
https://connect.mayoclinic.org/comment/1305421/
Hi davi0937, Like you, I was diagnosed with primary myelofibrosis but that was one month after...
https://connect.mayoclinic.org/comment/1338448/
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