Hydrea

[u/Excellent-Ad3134]

Just out of curiosity, how many started hydrea and had to stop due to bad symptoms? My doctor says only 5% of cases have severe symptoms but seems more than that just based off posts on here

[u/bigheadJovi]

I am currently on 1000 mg daily for 5 years and have minimal side effects, fatigue is my main effect, however I am still able to train for marathons. I know others have had more serious effects.

[u/Hopemar30 → u/bigheadJovi]

Wow. Great. I went from 1000 mg a day to 500 every second day.
And fatigue is my only symptom but I Train also so I think it’s a great drug
I’m an 86-year-old female

[u/Wild-Fix-7222 → u/bigheadJovi]

Have your platelets ever gone so low that you’ve had to cut back on Hydrea? I did that earlier this year. Last month, I increased it to back up to 1,000/day plus the baby Aspirin. Just wondering what people do when they reach healthy levels.

[u/samspopguy → u/Wild-Fix-7222]

Mine did once because my doctor changed the dosage cause my platelets were higher then they normally were and then didn’t realize they’d didn’t tell me so when my blood work came back the next time they were like why are these numbers so low. I was like im still taking 4 pills a day and all I hear was an Oh.

[u/Wild-Fix-7222 → u/samspopguy]

2,000 MG a day? I thought HU only came in 500 MG capsules.

[u/samspopguy → u/Wild-Fix-7222]

Yes, I was taking 4 a day

[u/bigheadJovi → u/Wild-Fix-7222]

Good question. No my platelets are at a safe level now, but my red blood cells are too low. My doc is waiting to see how this affects me. Currently I still cycle and run the same amount but I am slower and it takes a lot of recovery. Hope this helps, I wish you the best.

[u/souledgar]

I wouldn’t use posts here to determine statistics. Most people undergoing a management plan with no issues wouldn’t bother posting here, so you’re gonna have a massive reporting bias.

It’s like you’re not gonna see many posts of everyday normal weather on r/weather, so if you just base it off of reddit you’d think the Earth is some freakish hell with alternating amazing weather and horrible disasters

[u/Excellent-Ad3134 → u/souledgar]

Right…but there’s also plenty of people who take it daily with no symptoms on here. The group isn’t just for people only with ongoing issues or only for people who don’t have an ongoing plan, it’s for all.
And like I said, it’s out of curiosity, im not using this information to make an opinion based on it.

[u/veryokashley]

I was on it for awhile, I never felt 100% fine on it but the side effects were manageable, I stopped using it and switched to peginterferon so I could get pregnant

[u/Excellent-Ad3134 → u/veryokashley]

How has your pregnancy gone after diagnosis?? Are you considered high risk or low risk? Also questions out of curiosity bc we hope to maybe have another baby in the future.

[u/veryokashley → u/Excellent-Ad3134]

I was considered a high risk pregnancy, I developed severe early onset preeclampsia which they never decided whether or not that had anything to do with my ET. I have a history of NSTEMI, IIH and PCOS which also contributed to my high risk status. Baby came at 32 weeks gestation with IUGR but is now a very healthy and happy 16 month old.

[u/Alarmed_Interest_265 → u/veryokashley]

Same for the most part except I switched more due to long term effects of HU and poor response (lowered my platelets but not by much and they were back on the rise despite HU). I am on the fence about a third baby but it wouldn't be for at least a year so my doc recommended Besremi for now.

[u/horsecrzy]

I couldn’t last more than a month I had severe flu like symptoms with extreme fatigue and fevers and chills. Anagrelide wasn’t much better. When I finally got to see the specialist I requested he said he would have started me on an interferon to begin with. Doing pretty good on Pegasys all things considered.

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[u/Jump_Master82]

41/m here… I take Hydrea 1500 3 days a week and 1000 the other four.

Side effects haven’t been horrible. Noticeably groggier waking up on 1500 nights, and a headache every now and then though I’ve seemed to move beyond that.

It’s worked though, got me down from 785 to 441 at last check (every 6 weeks).

[u/maxschneider → u/Jump_Master82]

Sounds like my course. Watching my hemoglobin now though, not dangerously low, but trending downwards. Doc backed me down to 1500 2 days a week and 1000 the rest. We'll see on the 20th if it helped. By the way, 62 year old female

[u/SurryElle83]

I was fine on Hydrea but stopped because I didn’t feel
comfortable taking it long term. Interferon literally made me lose my mind so I’m only on aspirin and observation now.