Developed Rash on HU

Posted by pendlebear @pendlebear, 2 days ago

I am 72 years old and have ET with JAK2 mutation. I am on HU 500 mg twice a day. I have recently developed a rash on my torso and shoulders. Had steroid injection yesterday and taking Benadryl daily. The itching has stopped but some new rashes are appearing. I guess I need to give it more time. My platelets are lowering and hematologist says if that continues she will switch me to one pill a day. Has anyone else gotten a rash?

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Lori, Volunteer Mentor | @loribmt | 2 days ago

Hello @pendlebear. The good news is that the HU is working to lower your platelet levels…but Ooooh, the itching certainly isn’t an added benefit! I’m relieved for you that you’re getting some relief from the steroids and Benadryl. Some patients are lucky and aren’t bothered with any side effects while others report scattered occurances.

There are several discussions in Connect with other members who take Hydroxyurea for various blood conditions such as ET, PV, etc., and discuss their side effects to the medication. I’ve taken the liberty of posting two of them for you.
The first is from the discussion, How fast do you start to feel Hydroxurea symptoms? The link provided takes you to a comment by @mags17 who also experienced itching and a rash. They may have some insights for you.

~How fast do you start to feel hydroxyurea symptoms?
https://connect.mayoclinic.org/comment/1053252/
This is another discussion on potential side effects of HU
~What are most common side effects when starting HU (Hydroxyurea)?
https://connect.mayoclinic.org/discussion/hu-side-effects/
How long have you been taking HU? Is this a recent diagosis of ET?

pendlebear | @pendlebear | 1 day ago

Thank you Lori, I was diagnosed in August but only started HU two weeks ago when my platelets spiked. I had been on Jakafi but it stopped working.

Lori, Volunteer Mentor | @loribmt | 1 day ago

In reply to @pendlebear "Thank you Lori, I was diagnosed in August but only started HU two weeks ago when..." + (show)

Well, hopefully a lower dosage when you hit your target platelet level will stop the itch! ☺️

beebo | @beebo | 1 day ago

I have been on HU for about five years. 500mg 4x week for Polycythemia Vera. I only had one incident where I had a major itch spell from it. I dropped it in my water glass accidentally and then took it after it was partially dissolved. I’m thinking it was too much dosage too quickly. I’m taking mine now right after eating and have not had any itching since.

christina3444 | @christina3444 | 1 day ago

I take both 500 mg of HU capsules at night, just before bed. I periodically have itching over area of my right shoulder blade and tops of my hands. I’ve used lotion with some relief, and a back scratcher. And, now and again a prescribed cortisone cream. But, you made me think that maybe it’s the generic equivalent of Claritin that I take daily for sneezing that may be helping keep the itching controlled. I never thought about it before.
Benadryl makes me sleepy so I avoid it.
If you can, maybe sub the Benadryl for Claritin or generic?

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