Connect
← Return to What are most common side effects when starting HU (Hydroxyurea)?
Discussion
What are most common side effects when starting HU (Hydroxyurea)?
Blood Cancers & Disorders | Last Active: 8 hours ago | Replies (94)Comment receiving replies
Hi, I am 48 & was diagnosed last year with ET- JAK12 positive. My hematologist at first started me on the Hydroxyurea but I broke out in rash for 3 days before they decided to have me stop it. I am considered low risk due to never having blood clots or other issues other than elevated platelets. Mine for now are treated with a baby Aspirin. I also started taking vitamin D after doing some research to naturally lower them. I read that vitamin D has an affect on lowering platelets. It could be just a fluke but I get labs every 3 months & my last levels were 623. I know the levels fluctuate but I have had other levels in the 600 range as well so I feel like something I'm doing is helping. My highest levels since my diagnosis was 780 something. I go for my next labs in April. Hopefully your doctor will hold off on the Hydroxyurea if possible. My doctor told me it just helps with lowering the platelets so that is why she was comfortable with taking me off it for now. If something changes & they start going up we will revisit my meds.
Replies to "Hi, I am 48 & was diagnosed last year with ET- JAK12 positive. My hematologist at..."
Connect
Thank you so much for your reply. My doctor is insisting on Hydea but I have not started it. I agree to just take baby aspirin first. My primary whom I have never even met is insisting on liprinosil which I have not taken either as my BP is totally normal when I take it out of the doctor’s office. I have a detailed log to show her when I finally meet her this Friday. I did write myself a SMART goal to help me keep calm when I am there in the office which I am doing this week to hopefully be able to just relax there. I know I feel very anxious being there as I do not feel comfortable with the quick way all these meds were decided for me and previous experience with doctors there for my mom, dad, and daughter. I know I had a ton of labs done there recently and I am not an expert, but I do know me on my BP and did see my own BP machine read the highest I had ever seen it when they had me use to measure after they did twice. I am afraid at home I might actually faint as last night when I took my BP, it was 104/53. Normally it is not that low, more like 112/70, but it only takes one time to faint and fall and get a bigger issue right now.
You were fortunate to get a doctor who listened to you.
Thanks again for sharing.