New to Hydrea for ET

Hi, @lehall125
could I know during how many years did you take Hydrea? And during how many years you did not experience these awful side effects?

Hello @ebertolis, I took HU for only 6 months. I got whiplash and injured my neck in 2015 but rehabilitated it without drugs, injections or surgery. Prior to the medication, I NEVER had ANY problems with my teeth, hair loss or joint pains. Now that I am off of the medication, I still have the hair loss, but I am treating it with hair growth serum. However, I do not have the constant joint pains in my neck, back, and knees that I used to, despite still working out in my spin and weight training classes.

@lehall125
Thank you for your answering. I take this medicine only since two weeks but I scare potential side effects. It was prescribed for me end January, but I dared not to take it for a couple of weeks. I began all the same because my blood results deteriorated.

Everyone on this website appears to react differently to the use of HU. Some have little or no side affects. I can only speak to MY side affects. But I have ALWAYS had extreme side affects from any prescription medication taken. That is why I have sought other means to address my health issues. I'll keep monitoring my progress so you should, too.

Many of you on here have said "when they got off" the HU. My cancer center said I would need to take it for life, and it sounds like some of you either just quit, or had an end to treatment. Please comment.

Hi @jodyjazz. Hydroxyurea (HU) has been a frontline treatment for ET for decades for millions of people globally. It can be very helpful in controlling platelet levels in patients with ET or other conditions.

As you can see by reading comments in the forum, not one medication fits all. While most patients have no ill side effects from HU, there are others who do have reactions. Sometimes it can simply require finding the sweet spot in dosages with the medication. Failing that, there may be other drug options that patients can discuss with their oncologists. And of course, there are some patients, such as @lehall125 who has had a more serious reaction and isn’t able to continue with HU.

The goal of treatment, for ET with elevated platelets, is to ultimately keep the platelets at an optimum/safe level and to keep them from sticking together, causing blood clots. Having the mutation on the JAK2 gene isn’t reversible. So people who have this conditon will most likely be on some form of treatment lifelong. Think of it as having a chronic disease where you take medication to control it.

Reading through some of your past comments I see you’re having issues with hair loss and have reduced your dosage. Hopefully that works for you with minimizing hair loss and also keeps your platelet level happy. Do you also take a low dose baby aspirin daily?

I would urge anyone with joint pain on first starting HU to talk to their doc about reducing their dose and increasing it more gradually. Patients used to get hit with 1,000 mg per day right out of the gate and complained about aching joints. When doctors halved the dose, the symptoms subsided.

@loribmt
Thank you for the professional reply, and hope you are a real person and not AI :-0).
I do not take aspirin of any kind as it upsets my stomach no mater, coated, with food, uncoated, baby dose, etc. Taking the HU every-other-day makes dosing a little trickier. And i hope to go to M, W, F.
No one ever told me to stay out of the sun...........is that a thing on HU?
Thanks again,

Good morning, @jodyjazz. Nope, I’m not AI generated though I am genetically modified. 😂 (Had a bone marrow transplant several years ago so I’m a chimera with 2 sets of DNA). But my brain is still ‘mid-century modern’…vintage but semi-functional. ( And for the record, I do not use AI for my answers)

I can relate to your problem of taking HU every other day. The schedule gets complicated. What helped me was to make a very small calendar of sorts that I taped to the top of my pill box. I basically drew my own graph paper with 7 sq across for the labeled days of the week. With 5 rows down to equal the month. Then I’d schedule for the month by going through each week putting an X in the alternating squares where I would need to take the pill.
When I took the pill I’d scribble over the X or put a red dot or whatever, to note that the deed was done for the day.

Hydroxyurea is one of many medications which can cause photosensitivity to the sun. Usually that’s fairly well noted on the informational sheet that comes with the prescription. You can still be out and about in the fresh air and sunshine, but it’s important to cover up where you can, cute hats, loose blouses or SPF clothing, use sun screen liberally and to minimize the worst exposure during the strongest sun hours of 10 AM to 4PM. It is a thing. ☺️

If you’re interested, here’s a guide to help you choose a safe, effective broad spectrum sunscreen. From the EWG Environmental Working Group https://www.ewg.org/sunscreen/

Life is full of little challenges. But thankfully we humans are adaptable. So, while this ET/HU business is new to you, you’ll soon fall into a rhythm and it will be 2nd nature to pop the pill when needed, grab a cute hat, slap on the sun screen and off you go!

@loribmt
Wow, thanks. At first I thought you were a dragon (which would be been supercool) but read further and found the information on chimera. Very interesting, I'm old but still love learning.
Thanks again!