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

What are the counts for your red and white cells ? Bringing platelets down to 200 from 792 seems a big jump without affecting the other blood components

I've been on HU since mid-November when I was diagnosed with Essential Thrombocytosis. Started off at 500 mg twice a day, 7 days a week and am now taking it 4 days a week. My platelets were at 792 and are now around 200. I have been fortunate that my side effects have been mild - while on the 7 day-a-week regimen I got sudden, severe headaches that lasted less than 30 seconds. This didn't happen often enough to concern me, and they stopped when my dosage regimen was changed. Given the reduction in my platelet counts, I am happy to stay on HU for the foreseeable future.

@preacherswife1977,
I have been on 500 mg Hydroxyurea since June 2022. Because of side effects like headaches, diarrhea, lightheaded, etc. I have had time off, and then taking at different timelines. Platelets have been staying around 550 but my hematologist would like me to get below 400.
My timelines have been daily, month off, every other day, three days a week, and the last four days a week. Headaches suddenly became too much so I am stopping for a month, Then I will try Anagrelide at the lowest dose twice daily. Not sure yet what the lowest dose will be as waiting to get it, If Anagrelide does not work for me the next step will be Pegasys.
Best wishes, Eileen

I was taking Hydrea 500 mg on MWF since August. I have had no side effects that got my attention. Within the last month I noticed a change in my vision. I had an appointment with my eye dr that was coming up so I waited for that which was this past Tuesday. They put the yellow drops in my eyes to take pictures since I have macular in one eye and also 1 drop to dilate my eyes. When the dr came in I was looking at the images (like I knew what I was looking at ). He looked at them and said, "Lets look at your eyes then we will talk". He said the yellow drops were immediately soaked into my right eye. I immediately got concerned. He said at first he thought it was my retina but it was not, My cornea was swollen, He asked had I changed meds since my last visit (I have to go every 6 months). I told him yes and he asked what it was. He said is your skin dry? I said yes I would love to soak in a barrel of lotion for a day. He then asked if I had any sores in my mouth? I said yes. He said the medicine is causing your cornea to swell. He gave me steroid eye drops to get the swelling down.

That afternoon I called my hematologist. He said I was having an allergic reaction. I asked why did it just start that I had not had any problems. He said it just built up in my system. He took me off of the Hydrea and replaced it with Anagrelide 1 mg twice a day.

I went to pick it up yesterday but pharmacy had to order it. I should get it today. IDK what that will do after a period of time. My question is the Hydrea was 500 MG 3 times a week which equals to 1500 MG. The new medicine is 1 MG twice a day which equals to 14 MG. Don't make much sense to me

Praying you do well

No way could your dad have understood what was being read to him. I bet I would have struggled too even though I do not have hearing loss.

Well, my hematologist kept repeating "It is not cancer" over and over again so I appreciate that.
I agree that telling patients that they have a "rare chronic bone marrow cancer that which will allow for a normal lifespan.

Thank you for your kind response.

Hi, I’ve lived a relatively good life after being diagnosed with ET at 20 and I’m now 56. Was recently diagnosed with Myelofibrosis as I have some mild scarring in my bone marrow. I’ve been on Hydrea for 25 to 30 years with minimal side effects. It keeps my platelets at 400,000 but I’m pretty anemic. Oncologist wants to switch me to Interferon to slow the progression but I’m jumping through hoops to get insurance to pay for it. Anyone have any advice on how to get it paid for it. So maddening that our healthcare won’t cover medicine needed…. Also anyone on interferon for MF and how are you doing? Thanks! Praying for everyone!!!

God bless you. I will keep you in my thoughts and prayers.

I had ET for over 17 years. I was diagnosed at age 45. After the first 2 years my spleen became intolerably uncomfortable, so was prescribed hydroxyurea - starting at just 3 pills a week... I too let it sit on my nightstand for several days... until I was ready to face a forever change of now being on "chemo". But I realized that I was already at that forever change point with the disease. I did experience a wide roller coaster of side effects from the combination of hydrea and the ET. Some were really uncomfortable, some just a nuisance, and always fluctuating. Yet, for me, all were tolerable. I led an extremely active and physically demanding work lifestyle. Eventually I became resistant to the hydrea, despite having increased to a dose at 20 pills a week. I was then prescribed weekly interferon injections that I was on for 7 1/2 years, still leading the same demanding physical work life style. Only after 6 years of interferon did my platelets finally drop within "normal" range. The interferon alleviated some of the undesirable side effects of the hydrea, and also presented some more difficult effects of its own. You will eventually accept the roller coaster ride. You don't get very far complaining about it - as we all know that with MPN's people will tell you that you "look fine", so you don't expect pity. This June I was diagnosed that my ET has transitioned to very high risk myleofibrosis, so am switched from interferon to Jakafi. Jakafi comes with a list of unwanted side effects too. They have in just 2 months doubled that prescription as well. I can tell you that this stuff is a nothing burger compared to the interferon. So I take the prescription, if it is intolerable, they will work with me to fit the best alternative. I am now given a prognosis of just months unless I get a stem cell pretty urgently. It has taken 4 months to look forward to my next consultation Dec 1 at Mayo, that is unless I transition to AML in the meantime as well (which I am told is apparently pretty likely and a much quicker ending). I dont think, "oh woe is me" at all. I got 17 years because I accepted the managed care plan and lived for each next day. If I hadn't, maybe not so good to let the disease manage things. So for me, on to the next thing. God bless you all, and may you be blessed with good days and the ability to endure any difficulty ahead.

Buen día, yo tomo hidroxurea hace 9 años, actualmente tengo 40. Realmente no tengo efectos secundarios importantes salvo el cansancio.

Actually when my mother was diagnosed with pancreatic cancer, I researched everything....Her Dr gave her 6 mos or less.....We went to lots of Dr, some were quacks, but we did try an alternative type of Dr, he was 92 years old, and somehow the visit alone helped my mother feel better, he gave her some meds, never charged for meds, doctor visit $60 paid by medicare, we had to monitor her temperature and bring in numbers at every visit. Anyway she died 2 1/2 years later painlessly in her own bed, as she wanted. So who knows, where there isn't anything else, I can understand searching for hope. She did have whipple procedure, but one Dr said there were experimental treatments, but he didn't offer any hope, in fact he told us most patients who tried were sorry. I believe in science when it has an answer, and pray when I need hope