1. < Blood Cancers & Disorders

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

Posted by eddb @eddb, Oct 1, 2023

I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling along ok with (mostly monthly) phlebotomies, until a year or so ago. At that point my white blood cells and (most importantly) my platelet levels started to increase. The doc did a 2nd bone marrow extraction but I STILL tested negative for PV. After a CT scan and other tests were done to rule out any possible hidden bodily infections, my doc prescribed Hydrea 500 MG. I filled the script about a week and a half ago…and it is still sitting in a bag on my counter, unopened. I got seriously freaked out when I researched the drug and found all those nasty side effects associated with the drug.

Now, I’m sitting here knowing that my platelet count as of 3 days ago was 987 (over twice the normal level limit) and that I could throw a blood clot at anytime. I was holding off taking the drug, to get an appointment with a hematologist/oncologist for a 2nd opinion, but that appointment isn’t for another 10 days - I’m a nervous wreck! I do not want to take the chance with hydrea but I don’t want to clot. I don’t even have a real diagnosis other than suspicion of bone marrow cancer or the beginning stages of it….

I’d be curious to hear about what others have experienced while on this drug. Much appreciated!

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vivoconte | @vivoconte | Mar 31 6:07am

Hola, buen día. Si te sirve de algo tengo 41 años y tomo hidroxiurea hace 10 años.
Por el momento el cansancio y un leve caída del cabello son los únicos efectos secundarios q he experimentado.
Tengo trombocitosis escencial. Mis plaquetas estaban en 1 millón al inicio.

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mjpm2406 | @mjpm2406 | Mar 30 7:06am

I was diagnosed with MDS/MPN-RS-T in 2018. I have three mutations -JAK2, SRFS2 and IDH1-R132H. My platelet count was 887 so I started taking 500mg HU. I have always had very large red blood cells and way too many immature white blood cells. In January of 2024 the MPN component mutated to PV so I go to Sloan for weekly labs and vampire treatments if my HCT number is >45. No major symptoms except fatigue. I am currently on 1500 mg HU daily. The HU doesn’t seem to bother me yet. I also have Chronic Sensorimotor Axonal Polyneuropathy which is kicking my ass. I have no feeling below my knees in both legs so I need a cane to get around and for balance. Not sure which is worse - the blood cancer or the polyneuropathy. Together, they really suck.

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mrkevinl | @mrkevinl | Mar 29 3:29pm
In reply to @springer44 "When I got the results from my annual Medicare checkup last year my platelet count was..." + (show)
@springer44

When I got the results from my annual Medicare checkup last year my platelet count was 900k. By the time I saw an oncologist a month later it was 1.2 million. They put me on hydrea right away. I haven’t noticed any obvious side effects except for itching, although I thought that was a symptom of ET and PV as I had it before I started the drug. I can’t comment on thinning hair and dry skin either. I’m 69, and I’ve had those issues years before I started taking Hydrea.
I’ve been in this forum since then and what I’ve learned is active people have the best outcomes. I’ve got several landscaping projects going and we’re building a cabin; also things that were going before this diagnosis. It all takes longer because I take a lot of breaks, but it seems to me at least part of it is that I’m 69 years old.

My platelet count bounced around a lot for about six months before we hit the right dose and now my platelets are now consistently in the 300k range. I tap the capsules into the cap of the bottle and then right into my weekly pill holder. And daily from there right into my mouth. I do take a sip of water before I take the pills, with more water, just to get them down quickly. I never have to touch them. I feel as good as I think I possibly could at this point in my life, which is pretty good! Although I think about my blood cancer every day when I take my pills I don’t dwell on it. I treat every day the same as I did before my diagnosis, a blessing.
Like you I was freaked out by the listed side effects. Although they sound horrible, they seem to be rare. I’m way more concerned about the blood clot than the side effects. You got this.

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Your post is uplifting & amazing. I have been taking 1000mg HU now for 3 weeks. I started on 500mg HU after I had taken a bone marrow biopsy. My platelets were 572 & the biopsy showed no scarring & everything else normal. My diagnosis was ET with the JAK2 mutation at 64. I took the 500mg HU for a month with weekly labs. I had no problems with the medication but it had little effect on lowering my platelets. My Dr then asked me to try 1000mg & again no problems with the medication & my platelets are now at 427. I’m amazed that yours was very high at 1 point but now are in the normal range at 300. That’s great. I just get so depressed from not only going to the Dr’s office each week when for over 50yrs I rarely saw a Dr. I hope to soon not have to go for the weekly tests. Keeping fingers crossed. Your post really helped me cope today. Thank you.

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preacherswife1977 | @preacherswife1977 | Mar 4 11:43am
In reply to @nypara66 "It actually is a guessing game lol Once your platelets stay where they like them, we..." + (show)
@nypara66

It actually is a guessing game lol Once your platelets stay where they like them, we can only hope they stay steady! Is that medication instead of Hydroxyurea? I hear that works well but can possibly have more serious side effects. Also, is it very expensive? I’m so grateful that Hydroxyurea is only $8 for 30 pills. Between the labs and phlebotomies, I reach my deductible pretty quickly and don’t have prescription coverage. I hope you do well and get good results, Good luck!

Jump to this post

The Agrelide was about $130. It was on my 4th tier own my insurance. Should be about half of that once deductible is met. We had to go out of town Friday and Sunday so I took my first one Saturday afternoon around 4:15. 6 hours later I felt a little funny in my chest. I did not start taking it as prescribed until this morning. I took it around 6:30 and so far I am fine.

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nohrt4me | @nohrt4me | Mar 3 8:10am
In reply to @ontheverge "I am almost 72, with JAK2 diagnosed a year ago, no history of thrombosis. My hematologist/oncologist..." + (show)
@ontheverge

I am almost 72, with JAK2 diagnosed a year ago, no history of thrombosis. My hematologist/oncologist says to continue HU 500mg 3X weekly as long as my platelets (currently 587) stay below 600.

I'm glad you're experiencing minimal side effects. I no longer have the severe headaches that came with daily HU. Brain fog and lack of energy persist but that could be from ET itself or the stress of caring for a 97-year-old parent with advanced dementia.

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Oh, lord, you have a lot on your plate with aged parent! Been in similar situation myself. Take care of yourself, and don't beat yourself up for what you can't or didn't do. Will be thinking of you today.

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ontheverge | @ontheverge | Mar 3 7:17am
In reply to @nypara66 "Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around..." + (show)
@nypara66

Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around 450 now for a few months taking Hydroxyurea 3X a week. Took about 7 months to get the dosage right. Not sure about what everyone else’s doctor says but mine assures me that up to 600 is completely safe and acceptable. Minimal
Side effects on the low dosage but had some when I was taking it daily. Keep us posted!

Jump to this post

I am almost 72, with JAK2 diagnosed a year ago, no history of thrombosis. My hematologist/oncologist says to continue HU 500mg 3X weekly as long as my platelets (currently 587) stay below 600.

I'm glad you're experiencing minimal side effects. I no longer have the severe headaches that came with daily HU. Brain fog and lack of energy persist but that could be from ET itself or the stress of caring for a 97-year-old parent with advanced dementia.

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1 reply
nypara66 | @nypara66 | Mar 2 6:25pm

I also read the pamphlet and freaked out but did my research. This drug has been approved since the 1960’s! When I was taking it 7 days a week, my gums were tender, teeth hurt, I had some hair shedding and small brown spots on my skin. I also could feel my skin burning when outside even if it was in the 60’s. Spoke to the oncologist and he said that it will take time for my body to adjust. Within a few months my dosage was lowered to 5X a week and then just 3X a month after 7 months. My symptoms have all disappeared. I went to the dermatologist and he explained that this medication brings up old sun damage and that it’s important to avoid direct sunlight. My platelets were at 800 in the begining and now I’ve been steady for several months 450ish. I am JAK2 + and have PV labs every 5 weeks and phlebotomies started weekly and now about every ten weeks. I’m 13 months since diagnosis. Take the pills. A stroke is very likely if you don’t. You will be closely monitored and once your numbers go down, you’ll feel sooo much better. It’s ok to be scared. I think deep down, we all are.

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nypara66 | @nypara66 | Mar 2 6:10pm
In reply to @preacherswife1977 "Hematologist is satisfied with mine in the 400's. last time is it was 488. If he's..." + (show)
@preacherswife1977

Hematologist is satisfied with mine in the 400's. last time is it was 488. If he's good I'm good. Just started taking the agrelide today. Will see how that works. Some days I feel like it is a guessing game

Jump to this post

It actually is a guessing game lol Once your platelets stay where they like them, we can only hope they stay steady! Is that medication instead of Hydroxyurea? I hear that works well but can possibly have more serious side effects. Also, is it very expensive? I’m so grateful that Hydroxyurea is only $8 for 30 pills. Between the labs and phlebotomies, I reach my deductible pretty quickly and don’t have prescription coverage. I hope you do well and get good results, Good luck!

REPLY
1 reply
preacherswife1977 | @preacherswife1977 | Mar 2 3:28pm
In reply to @nypara66 "Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around..." + (show)
@nypara66

Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around 450 now for a few months taking Hydroxyurea 3X a week. Took about 7 months to get the dosage right. Not sure about what everyone else’s doctor says but mine assures me that up to 600 is completely safe and acceptable. Minimal
Side effects on the low dosage but had some when I was taking it daily. Keep us posted!

Jump to this post

Hematologist is satisfied with mine in the 400's. last time is it was 488. If he's good I'm good. Just started taking the agrelide today. Will see how that works. Some days I feel like it is a guessing game

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1 reply
kik1 | @kik1 | Mar 2 10:45am
In reply to @preacherswife1977 "I was taking Hydrea 500 mg on MWF since August. I have had no side effects..." + (show)
@preacherswife1977

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

Jump to this post

Different medicine mg strengths do not need to be the same for their effectiveness. Hope everything goes smoothly for you.

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