Essential Thrombocythemia: Making treatment decisions

I have been on Hydroxurea for 3 years. Also a low dose of Aspirin. I am in the high risk category being over the age of 60. The side effects I have experienced are dry skin and nails and also changes to my skin that include broken blood vessels around my ankles. I can’t be sure if that is the disease or a side effect to the drug. Many people say they experience fatigue, that has not occurred with me. Also, when I started the drug it took me a few weeks to get used to it. I just did not feel right. I wish you well. Keep up with MD visits and labs.

I just was diagnosed in early January so have been on Hydroxyurea for ~24 days now. I'm 46 with platelets around ~600 but i had a heart attack 2 years ago so they have me as high-risk. my experience was headaches for the first ~2-3 days with a little bit of nausea (not bad). The headaches went away with some tylenol and then went away (mostly) after the first 3 days.

After that I've settled in a bit but certainly notice muscle fatigue and joint pain more than before. I'm a pretty active person so not sure that is intensifies it. For example pre-Hydrea I lifted weights 3-4 days a week and ran ~30-40 miles a week. I ran 9 miles the other day and have continued my lifting but the best way to describe it is I currently feel 70-80% as strong as a month ago and I feel I need to get more restorative time in the afternoons and then am more "sore" in the morning. I'm told by others on this thread and by doctors that goes away with time on the drug but i haven't reached that point.

Lastly...it's definitely had an impact on my skin. So far it's been bringing out old sunspots on my face (which I've heard is common). Also I am feeling areas of my skin as more sensitive to the sun then before even in ~30-60 seconds in the sun. Not that they are getting burned that quickly but you can just feel the light more intensively. As a result I'm putting essentially full sunblock on my whole body now which is fine and I can live with it but also just something new. To combat this my wife researched that Coconut oil and honey based products are good (someone please tell me if they are not 😉 because I've been now using just a couple different types of creams at night and i'm already noticing the changing skin is stopping or getting back to the way it was.

Beyond that I think the last worth mentioning (at least for me) is the mental side of it. I've personally struggled a bit with the idea that I'll be on a chemo pill the rest of my life and that I may be 70-80% for that time. That may only be me, and likely because this is a new diagnosis for me, but it's probably been the hardest thing for me whether that is a side effect or not. Also something I'll likely get past but honestly it's better than another heart attack or ignoring the problem.

So yeah overall good luck with your decisions. I think you'll find a ton of people on this that forum that have been on Hydroxyurea for a long time. Even 30+ years and are going strong! so on the whole there are some side effects but to they really aren't that bad so far. There is also a good chat within this forum that discusses other alternatives to Hyrdoxyurea which I've personally found interesting.

Definitely continue with sunscreen rather than trying things like coconut oil or honey. These do nothing to block the UVA/UVB rays which are what damages your skin and cause skin cancer. Increased sensitivity to the sun is a known side effect of hydroxyurea.

I just was diagnosed in early January so have been on Hydroxyurea for ~24 days now. I'm 46 with platelets around ~600 but i had a heart attack 2 years ago so they have me as high-risk. my experience was headaches for the first ~2-3 days with a little bit of nausea (not bad). The headaches went away with some tylenol and then went away (mostly) after the first 3 days.

After that I've settled in a bit but certainly notice muscle fatigue and joint pain more than before. I'm a pretty active person so not sure that is intensifies it. For example pre-Hydrea I lifted weights 3-4 days a week and ran ~30-40 miles a week. I ran 9 miles the other day and have continued my lifting but the best way to describe it is I currently feel 70-80% as strong as a month ago and I feel I need to get more restorative time in the afternoons and then am more "sore" in the morning. I'm told by others on this thread and by doctors that goes away with time on the drug but i haven't reached that point.

Lastly...it's definitely had an impact on my skin. So far it's been bringing out old sunspots on my face (which I've heard is common). Also I am feeling areas of my skin as more sensitive to the sun then before even in ~30-60 seconds in the sun. Not that they are getting burned that quickly but you can just feel the light more intensively. As a result I'm putting essentially full sunblock on my whole body now which is fine and I can live with it but also just something new. To combat this my wife researched that Coconut oil and honey based products are good (someone please tell me if they are not 😉 because I've been now using just a couple different types of creams at night and i'm already noticing the changing skin is stopping or getting back to the way it was.

Beyond that I think the last worth mentioning (at least for me) is the mental side of it. I've personally struggled a bit with the idea that I'll be on a chemo pill the rest of my life and that I may be 70-80% for that time. That may only be me, and likely because this is a new diagnosis for me, but it's probably been the hardest thing for me whether that is a side effect or not. Also something I'll likely get past but honestly it's better than another heart attack or ignoring the problem.

So yeah overall good luck with your decisions. I think you'll find a ton of people on this that forum that have been on Hydroxyurea for a long time. Even 30+ years and are going strong! so on the whole there are some side effects but to they really aren't that bad so far. There is also a good chat within this forum that discusses other alternatives to Hyrdoxyurea which I've personally found interesting.

Keeping in mind that I am not a doctor nor a healthcare practitioner and am expressing only my opinion, I think your doctor is highly irresponsible for not doing more to lower your platelets. At that level, you are at risk for heart attack, stroke, pulmonary embolism, and DVT. My hematologist-oncologist considers platelet levels of a million or more the danger zone for these conditions. Although you are under 60 years old and have a lower risk, if your platelets continue to climb it's time to try Hydroxyurea. This medication has been around for decades, is highly effective at lowering platelet levels, and is affordable.