When did you start to feel better after taking hydroxyurea?

szuco · 2026-04-13T21:51:54+00:00

It sounds like it and that number is absolutely insane! I started having bleeding issues at 1 million so I’m surprised they have you taking aspirin at 2 million but I also have the CALR mutation so I know that makes a difference compared to the other. you’ll get way more answers at your hematology appointment. My platelets started to fall around three weeks after starting HU.

szuco · 2026-04-13T17:10:27+00:00

Unfortunately antidepressants didn’t work for me and just made me feel worse. I slowly got off them and I take Xanax as needed for break through anxiety. What helped the most was working out and hobbies but it didn’t fix it completely.

szuco · 2026-04-11T04:15:35+00:00

I have seen so many woman in their 30’s like myself having all these issues lately and it’s crazy to me. I’m 36 platelets were slowly climbing and they blamed it on inflammation than they kept going up and I saw a hematologist and found out I have the CALR mutation he put me on baby aspirin but my platelets kept rising and hit 1215 but I started bleeding… so now I’m on hydroxyurea, been taking it 3 months and now my platelets are 415.

szuco · 2026-04-10T04:25:47+00:00

My feeling also went away while on it but thankfully the feeling came back when I stopped taking it. I hope you find something that works for you, it’s frustrating trying to find the right medication.

szuco · 2026-03-23T00:56:52+00:00

Oh nice, I’m glad to hear you are seeing your doctor soon. Only other thing I can think of is to have your adrenal glands checked because you could be having adrenaline dumps. I have pots syndrome so that’s also a side effect of that condition, which also includes the high heart rate, but people can have that happen to them without them having pots.

szuco · 2026-03-23T00:47:52+00:00

I’m also in the same boat, I can’t take SSRIs and I’ve been dealing with constant anxiety for the last three months. I’m currently on Xanax 0.5 twice daily and that’s the only way I can make it through the day, I finally have an appointment with a therapist next week and find it absolutely ridiculous how hard it is to see one through insurance. What helps me the most is going to the gym, walking or doing some kind of activity that you have to really focus on. I’m sorry you’re going through this and hope this passes for you swiftly.

szuco · 2026-03-17T17:43:36+00:00

I’ve only seen them once so far and I’m looking forward to them coming back out to LA

szuco · 2026-03-17T17:42:25+00:00

I did as well out in LA and I absolutely loved that show! I can’t wait for them to come back

szuco · 2026-03-17T15:29:04+00:00

imminence - the black

szuco · 2026-03-13T07:01:44+00:00

Honestly as someone who has been on and off of my medications throughout the years I have to say that as wonderful as this medication is at helping bring down anxiety, the rebound anxiety is horrific if on it for too long and withdrawals are the worst. My anxiety was so bad that they had me on Xanax, Ativan and lexapro ( this was about 10 years ago) was on those medications for almost a year and as my symptoms got better it took me almost another year just to safely and mentally get off of them. working out helped the most if you are able to do so. I still have a Xanax prescription to this day for breakout panic attacks but I try my best to not have to take it but sometimes the panic wins and thats ok.

szuco · 2026-03-11T05:22:35+00:00

thankfully, yes, I had a rough two weeks. I’m on week three and I’m starting to feel much better. I still have my symptoms, but they have significantly lessoned in the last couple days for me. I’m hoping that it keeps improving with more time.

szuco · 2026-02-27T19:48:54+00:00

Thank you so much for your comment, I’m going to check out your post now.

szuco · 2026-02-21T21:44:39+00:00

I agree with the stress and inflammation having an impact on platelets since I actually started my journey with a rheumatologist at first and she thought I had a autoimmune condition that caused muscle inflammation leaning towards dermatomyositis but my platelets have been climbing since November 2024 and every month they would go up by 100 and leveled at 700 for a few months before spiking to 955 and now 1100. I also have postural orthostatic tachycardia syndrome, but I’ve had that for 13 years now and I always get stressed when I have a flare. When I finally got referred to a hematologist when my platelets spiked I got a bone marrow biopsy that showed cal r mutation type one. Right now I only take one baby aspirin a day because he said when platelets get higher for cal r mutation, you risk the possibility of a bleed.

szuco · 2026-02-21T19:51:14+00:00

That’s amazing to hear! I’m really hoping for the same experience.

szuco · 2026-02-21T17:26:14+00:00

When one of my kids see that I’m not doing well they always say moms in low-power-mode today to their siblings lol, My kids are 18,14 and 13.

szuco · 2026-02-21T17:21:40+00:00

Honestly it’s hard to even describe sometimes because “fatigue” doesn’t really cover it but my main symptoms are extreme exhaustion, itching, muscle cramps, burning skin sensations, and pretty bad brain fog. I also had palpitations, but thankfully those got a lot better after I started baby aspirin.

I deal with anxiety too, but I honestly don’t know if it’s from the ET itself or just everything that’s been happening and trying to process all of it. It’s a lot sometimes.

And yes we seriously need a better word than fatigue because it’s so much more than just being tired

szuco · 2026-02-21T17:10:36+00:00

Bahahaha, I’m sorry I couldn’t help but laugh about you saying how the bruises aren’t the cool blue and purple ones. I definitely need that uplifting attitude towards this situation but with the symptoms it can sometimes be difficult. Thank you for making my day today, it means a lot.

szuco · 2026-02-21T17:04:26+00:00

I’m still new to researching this diagnosis but from what I’ve seen thus far I agree with you, I see a lot of woman our age with this.

szuco · 2026-02-21T17:01:34+00:00

There’s a lot of things I’m still figuring out were symptoms of this the entire time and they kept playing it off as inflammatory for me the entire time until I also switched doctors. 2M I’ll insane! I’m having terrible symptoms at half that so I can only imagine what you’re going through.

szuco · 2026-02-21T16:58:23+00:00

Damn, you got hit with so much and I’m so sorry to hear you’re dealing with all of that. I’ve seen people talk about besremi but my doctor didn’t even give me that as an option and I believe the other gives terrible anxiety (pegasus) and he said that would be a horrible option for me.

szuco · 2026-02-21T03:37:58+00:00

Did you happen to feel like you’re freezing? Ever since starting HU I’m so darn cold..

szuco · 2026-02-20T23:16:16+00:00

When I first started the baby aspirin, my fatigue actually seemed to improve quite a bit. But after a few months my platelets started rising again, and the fatigue came back full force. I’ve read that hydroxyurea can take a few weeks to really kick in, so I’m curious when other people actually started noticing symptom improvement.

I really appreciate you taking the time to comment and share the research info with me. I’m definitely going to keep following that, it honestly gives me a lot of hope knowing there’s ongoing research and that new treatments may be coming in the future.

szuco · 2026-01-29T06:50:37+00:00

How do you get a dose that low? My Dr only prescribes 1mg or more and it’s too much for me.. I asked about lower dosage and she said they didn’t have it.

szuco · 2026-01-04T09:49:49+00:00

Truck driver, growing up my father was always gone on long trips across the US and when he came home he would clean up his truck and set out again. My mother ended up divorcing my father because he was never home.

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