Anyone else find the side effects of Hydrea 500MG frightening?

Hi @garyr443 Just wondering, Is there any reason you can’t still take the cranberry juice daily even though you’re back on the HU and the BP med? I ran a drug interaction and there aren’t any contraindications between cranberry, lisinopril and HU.

The anti-inflammatory properties of the unsweetened cranberry juice were certainly noticed by you over the month with less pain and an increase in balance and coordination. Not sure why you can’t have some in moderation. I drink unsweetened Monterey cherry juice daily. (1 ounce Concentrated juice gets mixed with 8 oz water). I think it would be similar in properties as your cran juice. Just a thought…

@loribmt Well, I wondered about this, myself. Since the cranberry juice didn't do anything that affected my platelet count (didn't lower it), I doubt it would interfere with the Hydroxyurea. As for the Lisinopril, though, the cranberry juice was keeping my bloodpressure normal, so there could be an interaction between it and the Lisinopril. It might lower my bloodpressure by too much. I take a 10mg dosage of Lisinopril, which works perfectly on its own. Perhaps I could lower my dosage of the cranberry juice, to maybe once every other day or once every two days?

two month ago started on 500mg 3 days a week, the first dose i have vascular effects, and nearly went out of the floor, called dr office seemed to dismiss, and said continue with it.... than they raised me to 1 per day more problems, and my platelets of 1 million went up not down, so they upped again 2 more pills total of 4500mg per week.. Now i'm high risk, as i have multi other medical issues that were under control that hydrox . I have a tummy wrap for a hernia repair, i can't throw up, so i get all this foam and dull pain in the wrap area.. i had grout symptoms so bad i couldn't walk for a week again my complaints went unheard,, I am getting a second opinion on Tue from Fred Hutch in Seattle, as the Big Private Cancer clinic in puyallup, has failed me, they don't follow threw, i haven't had a blood test since they upped my meds, have had to call EMT's twice due to foaming and dull pain in chest, as you are at high risk for heart attack and its hard to tell the differance when it stops you in your tracks and doesn't ease up, goes up your neck to ears the dull pain.. i'm almost to the point of just using my am and pm asprin and putting this in Gods hands, as to me the quality is better than sitting inside. But i don't want to have a stroke and be a burden to my family, as i only have a couple of sisters.. So we need more research and better meds for this disease.. it been a low priority not many new break throughs in 30 years, there are a few trials going on.. but i can't do them...

@ladyplumber7 Oh, boy, this sounds awful. As someone with comorbidities, I know that juggling a lot of health issues gets to be a lot to deal with. Just keeping track of the ailments and appointments, tests, and follow-ups is exhausting and wears you down sometimes.

Do you have a good GP or primary you can talk to about this? Sometimes specialists are so busy working on their little bit that nobody is looking at you as a whole person and whether all these fixits are working together.

I have seen GPs get real about offering helpful guidance and care when you tell them, "I am just about ready to give up on all this."

My fingers are crossed that you can get some answers on Tuesday. Please report back!

@ladyplumber7 Hello. Sorry you’re feeling so miserable and concerned. I have taken 1000mg of HU daily for over 5 years. There are side effects, mostly fatigue, that I attribute mostly to the HU but, at almost 79, some of those side effects I know are just from getting old.
There day I had the bloodwork done that let to PV diagnosis, I had some terrible pain in my knee and that was gout that was also found that same day.
I take allopurinol for the gout and, for the most part, have had very little to complain about.
I agree that you need a really good GP who can tie all your health issues together and help you decide the best meds and course of action for you.
I work on the theory that “God helps those that help themselves” so don’t give up. You just need to find a provider that listens to you, treats the whole person and makes up a program that actually helps.
Also, I know that diet and exercise can be critical to your overall wellbeing when you’re on HU.
Please, if you can, let us know how it goes with that second opinion,

Hello, I just joined the Support Group today. I was diagnosed with ET yesterday. I tested positive for the JAK 2 gene. My platelets counts are in the upper 500s. I am 61, but am otherwise healthy with no risk factors. Do you think I need to go on Hydroxyurea or can I try a more natural treatment?

Hello cetzler. An ET diagnosis is shocking. Who even knew you could have too many platelets? You must have a million questions.

I'm so glad you've found this forum. You can learn so much here. Best of all, you'll meet people who have lived strong with ET for decades!

But to make a treatment decision, you must rely on your oncologist. Ideally, she or he specializes in MPNs. If not, you may wish to seek a second opinion. ET is so weird that many doctors don't understand it at all.

With ET, a genetic mutation disrupts blood cell production. No food or supplement can undo that mutation.

Expect to be confused as you learn more. But you will find a way forward!!

@cetzler Welcome to the club no one wants to be in!

What "natural treatment"? I've had ET x 18 years, and there isn't a supplement or diet that addresses out-of-control platelets caused by a genetic mutation, though I've seen claims for everything from CBD oil to cinnamon to personalized IV infusions.

Some people right after diagnosis do feel they need to at least try an alternative treatment before they agree to HU. If that's what you decide to do, it's a good idea to let yr doctor know that's your plan so that you can be monitored appropriately.

Your oncologist will assess your need for hydroxyurea based on age, mutation type, and clot history. Docs may also look at your family history for types of strokes, heart attacks, and clots.

Doc will prob also recommend a daily baby aspirin, which reduces clot risk.

You *can* benefit by a heart healthy diet and appropriate exercise that will reduce over all stroke risks. Get a handle on weight, hypertension, and cholesterol if you need to.

@nohrt4me my daughter is a nurse who doesn’t want me to jump into anything with so many possible side effects, without looking at different options. Are platelet counts in the upper 500s super dangerous? What were your counts when you started treatment? What have been your side effects over the years? Thanks for responding to me!

@cetzler I have had no side effects except constipation and very mild hair thinning. The hair thinning reversed after a few years. This is not "I have bald spots!" thinning in my case. I was having severe fatigue before starting HU. I felt better after I started it.

Other people have nausea, insomnia, or diarrhea. My doc prescribed Compazine (anti nausea) for me with HU, but I never needed it.

Starting HU as soon as it is warranted and at lowest possible dose, increasing only to whatever keeps you in stable is what most docs do, and this gives patients time to acclimate. If you wait to start HU and let platelets run high, a doc may start you on a higher HU dose, which you may not tolerate well.

Any platelets over 450 can be "dangerous" depending on mutation type, age, and clot history. Yr doc should be able to give you Vegas odds on developing a clot if you don't take HU vs if you do. There is statistical research that shows people on HU have fewer clots and live a normal lifespan.

My dad also had ET. No one knew it until he had a leg clot. He had to go on coumadin, which threw him in the hospital a couple times for internal bleeding.

I get why your daughter is nervous about HU. It has a scary "black box" warning. The big question is whether YOU feel nervous about it and whether you think your daughter has more experience and knowledge than the doc who wants to prescribe it.

There are alternatives to HU--anagrelide and Besremi. Besremi is usually rejected by insurance for ET patients because it is super expensive. But if you are rich or have great insurance, you could ask yr doc about that.

Fwiw, I have family that gave me a hard time about my treatment. But it's not their body, and I am glad I chose the options I did.