Hydroxyurea: what side effects were so bad you had to stop taking it?

Posted by colran @colran, Jun 21 10:34pm

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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Profile picture for Lori, Volunteer Mentor @loribmt

@garyr443 The last line of your reply to me was very rude and I quote: “ I appreciate that you are only trying to maintain some caution but you need to actually read what I have written so that you'll know what you are talking about.”

Gary, that works both ways. Apparently you misread my reply that was clearly addressed and directed to @lorieliebrock regarding the cranberry juice for high blood pressure.
Here is the link. If you take a gander, you’ll note that your name isn’t mentioned even one time in my reply: https://connect.mayoclinic.org/comment/1605451/

Having had a bone marrow transplant (BMT) myself at Mayo, I can speak with absolute certainty that there are foods, juices, natural supplements which are to be avoided during treatment. While they may not pose an issue to general population, having a transplant is a rigorous undertaking involving a regimen of drugs that have to work in harmony and level of predictability.

The entire BMT process is challenging and traumatic to the body and organs. So our doctors and team pharmacists, need to know exactly what we’re consuming which could potentially cause a contraindication with the preconditioning chemo and post transplant meds we take during our transplant journey. Even juices, though food, when used for therapeutic purposes can be considered a supplement.
So I’m not going to quibble with you about this.

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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.

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Profile picture for scienceteacher @scienceteacher

@garyr443
My RBCs have been low well before HU but they have taken a slight downturn. My Oncologist lowered my HU to 500 mg 3 days a week from 4 but my platelets jumped from 398 to 499 in three week and my RBCs just increased slightly. I want to go back on 4 times a week but they want to wait and see. They don't want me to start iron but I am doing it anyway because I really want to get the RBCs up and the platelets down and I have no real side effects from the HU.
Please keep us informed about the results from the cranberry juice. I would love to get my RBCs up without starting a new medication that might have side effects.

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@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.

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Profile picture for garyr443 @garyr443

@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.

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@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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Please 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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Profile picture for garyr443 @garyr443

@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.

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@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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Profile picture for Lori, Volunteer Mentor @loribmt

@garyr443 The last line of your reply to me was very rude and I quote: “ I appreciate that you are only trying to maintain some caution but you need to actually read what I have written so that you'll know what you are talking about.”

Gary, that works both ways. Apparently you misread my reply that was clearly addressed and directed to @lorieliebrock regarding the cranberry juice for high blood pressure.
Here is the link. If you take a gander, you’ll note that your name isn’t mentioned even one time in my reply: https://connect.mayoclinic.org/comment/1605451/

Having had a bone marrow transplant (BMT) myself at Mayo, I can speak with absolute certainty that there are foods, juices, natural supplements which are to be avoided during treatment. While they may not pose an issue to general population, having a transplant is a rigorous undertaking involving a regimen of drugs that have to work in harmony and level of predictability.

The entire BMT process is challenging and traumatic to the body and organs. So our doctors and team pharmacists, need to know exactly what we’re consuming which could potentially cause a contraindication with the preconditioning chemo and post transplant meds we take during our transplant journey. Even juices, though food, when used for therapeutic purposes can be considered a supplement.
So I’m not going to quibble with you about this.

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@loribmt
So if you don't mind saying --the outcome of the BMT?? Best outcome, I hope.

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Profile picture for jodyjazz @jodyjazz

@loribmt
So if you don't mind saying --the outcome of the BMT?? Best outcome, I hope.

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@jodyjazz ☺️Absolutely, that’s the goal!

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@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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Profile picture for sutt9101 @sutt9101

I have had PV now for about a year. I am a 68 year old female. I am JAK2 positive. I am on 81mg of aspirin daily. I began Hydroxyurea 500mg daily about two months ago. On the second day, my face and ears were beet-red. By day four, I got a red pin-dot rash on both arms from the shoulders to my wrists. I had headaches and nausea. The hardest symptom was sores and ulcers in the mouth and throat, along with white patches. It was difficult to swallow. It felt like an extreme case of strep throat. My oncologist prescribed fluconazole and it gave great relief in 3-4 days. My doctor discontinued Hydroxyurea. I am now on Besremi, which is an interferon therapy. Hydroxyurea was not for me. I had to discontinue taking it eighteen days after starting it. I hope your health journey improves and you find the best drug suited to your needs.

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@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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