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

Update:
I have been on Hydrea for nearly 10 weeks now and no side effects, whatsoever. I'm nearly 73 and have Seronegative Arthritis, so I know about pain, but I can honestly say that I have had none from the Hydrea. I think because I take it at night, I sleep through the hard work it performs for the first 8 hours.

My platelets dropped from 720 to 420 in the first 5 weeks. Saw the doctor yesterday and he said hematocrit is down from 51 to 37, so I'm in good shape. Iron is still very low, but I was told if in 12 weeks it's still low, they may increase the Hydrea to 2 capsules every other day to see if that helps.

It's a different journey for everyone. Go into it with a good frame of mind, drink lots of water, and by all means, KEEP MOVING. Exercise is Key to your Recovery and health!

Best to you!

66-year-old male. Have E.T. and been on Hydrea for over 14 years now. I take 3 500mg. daily as advised. My health has been positive and good. I keep active when I can .. and eat wisely etc. I live in Queensland, Australia.
All the best.

When you mentioned that your “gut had to get used to HU,” what gut symptoms did you have to deal with, and how?

Bill

very loose bm......even with brat diet, but after a year my gut got used to HU
BRAT diet bananas, rice, apple sauce, tea, recommended by Dr

Thank you for responding. I stopped drinking coffee a few months ago, and the IBS-type symptoms I've been plagued with for years are gone, and I have more energy as a direct result (no other life or habit changes). Contemplating HU medication for ET worries me: a "loose" bm to my understanding I interpret as providing/extracting less nutrition from the food I eat. You have my respect for enduring a year of disturbed intestines!

Bill

PS. A second opinion will not change the results of your blood tests.

Take the Hydrea and then, if you want, continue to look at a second opinion, although I am fairly certain that they will verify what your blood tests show.

Let me put it this way: You can refuse to take the Hydrea and throw a blood clot if you wish. The best thing would be to die from a blood clot; the WORST thing would be to live but have such a bad stroke that you can no longer care for yourself and be committed to a nursing home for the rest of your life. Think about it and good luck.

77 yr old female , ET, diagnosed 10 mos ago , platelets 940, 000. Started Hydroxyurea 500 mg daily , first 2 mos platelets decreased dramatically , then plateau’d, added 1 extra capsule/week & platelets dropped to normal. Was also reluctant to start cytoxic agent but no problems & better than having a stroke. Also take daily baby Asa

My Hemotologist put me on iron supplements every other day, which is made a big difference. Have you tried that?

I am a 69 yo female with no known underlying conditions.
Almost 3 years ago I had a routine blood panel done and my platelets were around 1,600. A bone marrow biopsy was done along with genetic testing and they could find no reason for the high count. My doc prescribed hydroxyurea 500mg 1x per day. Through the first 2 years the doc increased my dose to 2 per day for 4 days and 1 per day for 3 days. This seemed to do the trick with lowering my platelets to just in the 400- 500 range with my other blood count varying slightly. I’ve had very few, if any, side effects. About 6 months ago my platelet count rose again to almost 700. I’m now on 2x 500mgs 7 days per week. My most recent blood work showed my platelets down to 358 (yeah!) and my RBC at 2.96 (lower than the low normal of 3.6) and my monocyte % is 11% (higher than the normal range of 8%). My neutrophils are also outside of the normal range at 49%. I’m still lucky to have few symptoms. I did express my concern for the white blood cell differential readings. I am going to decrease my weekly dosage by 2 500mg capsules per week (going from 14 to 12 capsules per week).
I guess my question is, has anyone been on hydroxyurea long term and had increases in platelet count after some time?
Also, I’m seeing significant hair loss. Anyone else and, if so, anything one can do about it?
I’ve also been experiencing leg cramps and swelling in my ankles. I walk, on average, 3 miles per day and also exercise. Anyone else have either/both of these complaints?
I’m so glad I found this group!
Good health to everyone.

Yes! Mine just prescribed me that regimen yesterday when I saw him.