How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Thanks for the encouragement.

I avoided Hydroxyurea for 3 years due to side effects. I began when count go to 1.5 million. 2 per day was very bad with brain fog and ED. I now take 1 500 mg per day for 5 days per week and want to go lower. Platelet count is around 700,000 which works for my doc. Hope this helps.

Two years Hydroxy, dose varies, currently 3500mg wk for ET; Dr happy at 800k range. Fatigue is top issue though other meds may contribute along with mid-70's. Am I the only one experiencing hair loss? Reading here I'm beginning to wonder about brain fog?

Side effects to all are to be expected…it comes down to what manages the condition AND what side effects are acceptable. I have no suggestions for a rash or fatigue, but after 6 months of injections, I slept 14 hrs a day and finally convinced folks I wanted back on Hydrea!
Within a week I was not even napping! Need to watch the cloudy lung, but scans show no progress and no disappearance after being off Hydrea for six months. Turns out it could be residual effects from assymtomatic Covid….or my blood pressure meds. Just know, rare conditions are NOT a fully understand by the best medical experts! Be your own advocate…and good luck

I'm a 72 yrs. old and I was diagnosed with ET in 2011 when my platelet count was 800,000. I was told by a Dr. that I probably had had it for 5+ years prior. After a bone marrow confirmation of ET with Jak2 positive I started on hydrea. I did have redness of my cornea and eye lid tissue, joint soreness, and bleeding gums especially when they dose was increased. My 1st oncologist told me it wasn't rare or a cancer which discouraged me when I was feeling several side effects with no support from her. My platelet count has had increased amounts several times during the duration of my disease. Increasing of the hydrea has maintained the platelet count from 350,000 - 500,000+. I take 11 500mgs a week. My most recent cbc indicated 600,000 platelet count. The oncologist is suspecting the hydrea may not be working, and wants to change meds to agrylin. Has anyone experienced the same issue and tried this medication.

Hi MPT77, welcome. I think @onamission @jfinlay @linde @tresman10 and @lefsequeen may have some experience with Agrylin (anagrelide).

When will you start the new medication?

Hi, my experience with anagrelide was unsuccessful, as I had severe reactions. I only used it for a few weeks. Sorry I can't be of more help. I have not had negative impacts with hydrea, so have continued with that for many years. I would not be worried about platelet counts up to 600,000. Many people seem to manage well with higher numbers that that. I, however, start to get pretty severe migraines if my counts rise over 500,000. Maybe you will do fine on anagrelide. Many people do.

I will have a cbc check in 1 month to see if the count is higher. Thank you for the advice. I guess my main concern is being on hydrea for so many years even though I do feel thankful for living somewhat of a normal life, and the only problem besides fatigue, joint pain, and in the last few years my gums have become difficult to keep healthy. It has been so helpful to have this site in order to read others experiences with this disorder. I have not had much support from my Dr. so thank you for all. the posts!

Hello Huronshores......hope all is going well for you during this time of covid. I have had three vaccines to date. I had been advised by my hemotologist to stop taking Hydrea for four weeks after each dose. I wondered if others had to do the same. I had bad side effects, like very low hemoglobin, shaky and dehydration. I am now afraid to have the fourth dose if I have to repeat that procedure.
Have you had your vaccines and what course did you follow. I really appreciate any feedback you can give me. Thanks

I had fourth dose Pfizer. No problem with any dose. I was not advised to stop Hydroxyurea before or after any dose.
Good luck