Hydroxyurea: what side effects were so bad you had to stop taking it?
Hydroxyurea what side effects were so bad you had to stop taking it? I am about to start week 4 and my brain is pure mush. The hallucinations are nuts! I am trying to stick it out for 6 weeks. Insurance won’t pay for Jakafi . They said after 6 months they would reconsider. Looking for any friends can tell me their side effects.
Thanks very much!
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@loribmt my apologies, Lori. Your name is similar to loreliebrock's, so I probably confused you with her. That would explain your reference to a bone marrow transplant, but then, your message was clearly addressed to me. I assure you I am not having any transplants of any kind, let alone bone marrow. My name was certainly at the top of your message, otherwise, how did I receive it?
That said, I am not arguing with you about using cranberry juice during any treatments. I made it clear, in multiple messages, that I would not be using the cranberry juice until after I stopped using the Lisinopril and the Hydroxyurea, for exactly the reasons you gave.
@scienceteacher I recall reading that taking iron supplements is not the way to increase your red cells. You would think it can, and I thought the same thing, myself, but, as it turns out, for some reason, that's not a good idea. If I see what I read about that, I'll share it with you.
@garyr443, depending on how your notification preferences are set, you may have selected to receive an email notification for each new post made. See more information about How to Set Notification Settings in the Help Center https://connect.mayoclinic.org/help-center/
This blog post may also help.
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
To everyone, as I do from time to time, please take a minute to review the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/ These are rules of conduct all members are expected to follow to keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful.
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5 ReactionsPlease note: While cranberry juice is known to interfere with platelet function and can decrease platelet counts in some individuals, it is not a safe or reliable medical treatment for lowering platelets.
All information shared by members on the Mayo Clinic Connect is for informational and support purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.
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6 Reactions@garyr443 Thank you. My Oncologist wants me to stay on the current protocol for now until my July virtual appointment with her. I think she realizes how headstrong I am so her nurse wrote "Don't make any changes please." lol
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1 ReactionRash and high fever.
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1 Reaction@loribmt
So if you don't mind saying --the outcome of the BMT?? Best outcome, I hope.
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2 Reactions@jodyjazz ☺️Absolutely, that’s the goal!
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1 Reaction@colran, did you have a chance to report your side effects, especially the hallucinationis, to your doctor? How are you doing?
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2 Reactions@sutt9101 I have had PV for 6 years, and on 100 mg Hydroxurean for almost a year. Prior it was just aspirin and phlebs. I have not had any problems with Hydrox, however, I was just re-tested to see what my Jak2 was doing. It was 15% 6 years ago, and is now 68%. Not good. I am attempting to move to Besremi which targets the Jak2 itself. My insurance continues to ask for more proof that I really have PV. I just had a new EPO lab done and waiting for the results. I am hoping this will prove my status. If not, my co pay is $12,000/yr!!!!. I have also considered Jakafi however, its function is different, and I think I need to go to the source. My onc/hematologist has suggested either one and leaving it to me. I would love to know how you are doing on the Besremi.
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