How long before side effects from Hydrea start?

Thanks for sharing. Good luck with your prescription management.
Ann

I just recently started taking Hydrea due to my platelets being so high and have been diagnosed with ET. My dosage was low and then was increased shortly after starting the medicine, with this I crashed and my platelets and wbc went very low. I have had mouth sores and now my hair is falling out. Is this due to the dosage?

You didn’t mention what dosage you are on now. Hair thinning is definitely a side effect of Hydrea.
To avoid mouth sores, fill your mouth with water, tilt your head back and drop the capsule into your mouth and quickly swallow. I’ve done it this way since I started it 5 months ago and never had a mouth sore. Good luck.

@arecchie I was on 4,000 mg for about 5 days but once I got blood work done again, my Platelets and WBC dropped, they took me off of all medication. I received a platelet transfusion this past weekend. Currently my levels are normal, and my doctor and I are discussing the future treatment plan. My doctor expects my platelet levels to rise again. I am concerned with all medication having the side effect of hair loss, I know that is vain, but I have been dealing with this diagnosis pretty well until now when my hair is falling out.

Yep. Hair loss is an issue. I have thick hair, and I can see how much my hair has thinned. My head circumference is about 24", which is an inch larger than the largest wigs out there, so I am concerned because once you lose your hair on Hydrea, it will never grow back as long as you have to be on the drug, and in my case, that's the rest of my life. It is demoralizing and not vain at all! it's the reality of the drug. I am 73, so I figure if I lose it all, at least I lived a long life with a full head of hair, but I feel for those who are much younger and going through this.

My doctor says that it's rare to lose all of your hair on this drug, but there are people who have lost it all. If it keeps falling out like it has over the last 6 months, I don't know what I will look like by next October. I wonder if anyone reading this thread can tell us if the hair loss bottoms out after a while and you are just left with much thinner hair?

Hi arecchie, I was diagnosed with ET (Jak2 mutation) in November 2022. Started with 500 mg Hydroxuria daily. Unfortunately it did not lower my platelets. My number was 763 initially. Only went down a little bit. After 4 months I started taking 1000 mg daily, lowered platelets to 365. I get checked every 4 months. My platelets went up to around 400 in the last 2 1/2 years. O/H is not concerned. All other numbers are good. Still on same dosage, once in a while I have a mouth score, my Hair thinned out a little bit. Just started taking Biotin. Not sure if it will help. Other than that I have no side affects. I am almost 70 years old. Had some thinning hair before taking Hydroxuria. It is not bad at all, hoping for the best.
Best wishes to all of you
Regina

Good to know. Hope all continues to go well for you, Regina.

This med didn't do much toy hair but has destroyed my life in every other way. I started on it last January and felt like I had as dying a little bit each week. I stopped the med abruptly 3 weeks ago ER my PCP and an appt with a new hemo/oncologist for this Monday. The other DR??? Never even called or sent a letter inquiring where I have been since I truly believe he is a quack. I don't know if I am going through withdrawals or what because I am so sick I can't explain since stopping the poison and I never felt that way before being on HU. The Dr never cared how I felt and stressed I would be on it for life. My PCP said no Dr should act that way and if you need to be on something for life it is the Drs resp to make you comfortable and find an alternative med not insist you be kept on something making you sick. I have even had normal platelets at times before HU and this Dr said it didn't matter. He never did a BMB and just went by the blood labs. I studied this med because I worked as a phlebotomist, lab and EKGs in the hospital and it seemed to irritate him if a asked questions. He said to another patient I was told that no one questions him! Hope you don't get to bad of symptoms and all does work out for you.

So sorry that you have had so much trouble with the medication and the Quack doctor. You know, you can report the doctor to the state medical board, don't you?

I am fortunate that I have UNC Medical Center and Duke Medical Center in my back yard, so good medical care isn't an issue. I do fee for those who don't have major univeresity medical centers within easy reach. It makes a challenging situation much more challenging.

I do hope you find your way through the morass and get the help you need. Good luck.

Good morning, @jello13577 Reading back through some of your previous posts, I see that you’re scheduled for an appointment with a new oncologist this month. You certainly got off to a rocky start with your previous doctor so I truly hope you have a much better experience.

I’m sorry to hear you had such an extreme reaction to the HU over the past year and that your doctor wasn’t responsive to your needing to change your treatment plan. We all react differently to meds and fortunately there are alternatives to HU.

Well, hopefully you can put all of that behind you with the new doctor. I had a similiar experience with one of my providers and was fortunately was able to make a change. While I really wanted to throw my previous doctor under the bus, I knew the new appointment wasn’t the place to do that.
We have limited time with our doctors. So if I may offer some suggestions, have a little notebook or make notes on your phone of what you want to discuss. It will help the appointment stay on task.
It’s ok to touch briefly on what has happened with the HU experience and your previous doctor’s dismissivness. That’s basically why you are seeking new counsel. The new doctor can’t change the past or what’s happened. But they can help you move forward. So try to be open and allow the new doctor to ask questions and take direction of the appointment from that point on.
You have every right to ask questions and seek clairification. You’re also rightfully gun-shy of treatments from your past experince so don’t be shy about talking through suggestions of any new meds being offered.

If you’re interested, there’s a helpful discussion in the forum with tips from other members on “How to get off to the best start with a new specialist”.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Janet, what was your original diagnosis?