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How long before side effects from Hydrea start?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (63)Comment receiving replies
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?
Replies to "Yep. Hair loss is an issue. I have thick hair, and I can see how much..."
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.
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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