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

@garyr443 how much cranberry juice for maintenance of blood pressure and was it for high?

@garyr443 When my platelets went through the roof while in a rehab facility after a broken hip and ankle they started me on both. This was prior to the diagnosis of ET. That was a bit over a year ago.
I'm probably in the same boat as you with continuing RBC cell supression.

Hi @lorieliebrock I just wanted to pop into this conversation regarding cranberry juice or any other supplements if this is for your use right now.
You’re about to undergo a bone marrow transplant and from my personal experience there are lists of supplements and foods that are discouraged while in treatment. Cranberry, pomegranate, cherry, grapefruit juices and a host of other supplements such as ginger, turmeric, etc., can interfere with certain medications. Cranberry primarily affects drugs metabolized by liver enzymes, particularly those with narrow therapeutic windows. There are other supplements and foods which can impact drug efficacy, thin blood or interfere with drug metabolism.
So please, talk with your transplant team doctor, NP, PA or transplant pharmacist before taking anything other than what is prescribed by them. ☺️

@scienceteacher Well, that's good. As you probably know, both B12 and Folic Acid create new red cells. With my Hydroxyurea, they are the only thing that is keeping my red cells from disappearing entirely.

@lorieliebrock In my case, my bloodpressure would be high, though not extremely high without the Lisinopril (10mg). It's been less than a month since I started the cranberry juice, after quitting the Lisinopril. As soon as the Lisinopril was completely out of my system, after about two days, the cranberry juice was all I had. At first, my readings were a little higher, but have now settled down to normal. This morning, for example, it was at 114/71 with a pulse of 65. I can't tell you what results you might expect, however. This will vary from one person to another. At this point, I have been using the cranberry juice for almost a month. It will be about a month since I started this at the end of next week. If you are going to try this for yourself, I recommend Lakewood Pure Cranberry not from concentrate juice. This is sold at Whole Foods stores. It would be a good idea to talk to your doctor about this before doing anything. I have done so with my hematologist, who has treated my ET for 12 years.

@loribmt Where did you get the idea that I'm "about to undergo a bone marrow transplant?" Of all the things people here have accused me of saying about myself, that has certainly NOT been one of them! Another thing, these juices are food, NOT "supplements." Also, cranberry juice has NOT been "discouraged while in treatment." As I have actually said, my hematologist and I have discussed this thoroughly before I ever started using the cranberry juice. He certainly didn't need to "discourage" me from doing so and I explicity told him that I would begin using the cranberry juice AFTER having (temporarily) terminated the use of my Hydroxyurea, as I am perfectly aware that the Hydroxurea should not be used while consuming cranberry juice, as it would interfere with the Hydroxyurea. 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.

@lorieliebrock Sorry, I missed the part where you asked me how much cranberry juice. What I had read was that I should drink no more than 8 oz per day, diluted 50/50 with water to reduce the effect of the natural (NOT added) sugar content. I have actually exceeded this precaution by pouring half an 8 oz glass with cranberry juice and topping it off with water to make a total of 8 oz. So, the actual amount of cranberry juice I'm drinking each day is about 4 oz.

@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.

@loribmt
Lori,
I was thinking about after recovery if my blood pressure stays up (caused by Jakafi), but I would still do as I have been and check with my team prior to starting. This is a good reminder though.
Lorie

@lorieliebrock After the transplant, if all goes according to plan, you may not need the Jakafi again. ☺️