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Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27, 2024

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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garyinmo | @garyinmo | May 30 1:05am

Hi all. Does HU cause anyone else to have extremely slow healing simple wounds, like scrapes? I've been on it 4 years for the CALR mutation and have been lucky to have no other symptoms, but in the last year I've had two small abrasions on my ankles that take months to heal, and one even was infected. I am on blood thinners too which could also be part of the cause.

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janemc | @janemc | May 30 4:44am
In reply to @garyinmo "Hi all. Does HU cause anyone else to have extremely slow healing simple wounds, like scrapes?..." + (show)
Profile picture for garyinmo @garyinmo

Hi all. Does HU cause anyone else to have extremely slow healing simple wounds, like scrapes? I've been on it 4 years for the CALR mutation and have been lucky to have no other symptoms, but in the last year I've had two small abrasions on my ankles that take months to heal, and one even was infected. I am on blood thinners too which could also be part of the cause.

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@garyinmo

I've noticed this too. My skin is more dry and more fragile than it used to be.

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nohrt4me (Jean) | @nohrt4me | May 30 7:16am
In reply to @garyinmo "Hi all. Does HU cause anyone else to have extremely slow healing simple wounds, like scrapes?..." + (show)
Profile picture for garyinmo @garyinmo

Hi all. Does HU cause anyone else to have extremely slow healing simple wounds, like scrapes? I've been on it 4 years for the CALR mutation and have been lucky to have no other symptoms, but in the last year I've had two small abrasions on my ankles that take months to heal, and one even was infected. I am on blood thinners too which could also be part of the cause.

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@garyinmo HU causes overall skin, hair, and nail changes that most of us notice over time.

But it can also cause skin ulcers on feet, ankles, and legs in some patients. This happened to my dad, who also had ET and was taking 2,500 mg of HU every day. This was in the early 2000s, and it became a quite serious wound.

Now they discontinue HU until patients heal and then lower the dose or move to anagrelide or an interferon. Please tell yr hemo about any leg/ankle sores that don't get better.

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susi1950 | @susi1950 | 6 days ago
In reply to @diannerk "@jbcl Good you are on the easiest answer we have to high platelets. Good luck." + (show)
Profile picture for diannerk @diannerk

@jbcl Good you are on the easiest answer we have to high platelets. Good luck.

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@ https://medicalxpress.com/news/2019-09-scientists-arthritis-drug-effectively-blood.html

Several good articles if you search ET on this sight about alternatives to HU

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