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DiscussionEssential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
Replies to "Hi Phyllis, We live in the suburbs of Philadelphia and do not have a Mayo Clinic..."
I’ve been taking Hydroxyurea for at least 30 years and last year or so was switched to Anagralide with no problems or changes. I also have Afib and take a prescription for it. Don’t remember the name of it. My hematocrit ranges between 27 and 22. When it gets to 22 I get a red blood cell infusion and that’s good for at least a week but usually 2 and so 3. I can do anything I want, just not for very long before I want to sit down.
Thank you for the reply!
I’ve taken Anagrelide since 2018. Every morning and evening after taking the pill, I would have palpitations, migraine, diarrhea, stomach pain, and nausea. So many times my heart felt like it was going to jump out of my chest. The symptoms would last for several hours, except for the palpitations. I went to work sick every day.
I told my oncologist my symptoms but he had no advice for me. My numbers were all over the board. After researching, I found out that certain foods increase platelets and guess what, they were my favorites, all dark leafy greens, amongst other things. So I cut all those out. My numbers dropped but I was still getting sick. I figured out that after taking the medication for so many years that my gut biome was depleted. I was right, so I started taking a pre and probiotic with every meal. All my symptoms disappeared within a month. I had forgotten what it felt like to be well.
If you can avoid the anagrelide, certainly do so, it’s more potent than the Hydrea.
Best, Phyllis