Developed Rash on HU

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?

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.

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

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.

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?

I took HU for 7 years. Never realized the side effects that were associated with that medication until I developed a sore on my ankle that neither my oncologist or my primary did anything for. Until I was in extreme pain and the sore was growing and spreading, then one of them said I needed to see a wound specialist. Finally the oncologist decided it was a side effect of the HU and changed my prescription to Jakafi. The best part of that change is that I don't itch all over all the time. Jakafi has been problematic for me because my hemoglobin dropped steadily to -8. Now I'm going to start Ojjaara next week. I need to stop reading the possible side effects of these medications, because Ojjaara scares me. Has anyone been taking Ojjaara for an extended time? What side effects have you experienced?

Your comment reminded me of something my GP told me many, many years ago when I questioned a med he had prescribed (I don’t recall what that med was), he said, “You wouldn’t take aspirin if you read the warning label”.
So, keeping that in mind, it’s good to have information but, if you have a doctor/s you trust, have a discussion about the med and trust your doctor.

Agree with the itching...this article made me chuckle because I asked my kid to get me a back scratcher from Walmart just this week! I have good luck using gold bond for diabetics anti-itch lotion. I am not diabetic, but the lotion is great and helps when it's bad I use hydrocortisone topically.

Agree regarding the itching - tops of hands, chest, back (where I cannot reach!), and arms. I started to get blisters on my arm from scratching it too much, so I applied OTC cortisone cream, started taking an antihistamine, and cut my fingernails very short, so if I do scratch, I am less likely to break the skin.

The other side effects for me on 500mg daily of HU (I also take two total baby aspirin a day (am and pm) are slower gut "motility," so I adjusted my diet, added even more fiber (to 40-45 grams a day now), and added some dried prunes and blueberries to my morning oatmeal. If that doesn't keep me regular, I take 1-2 tbsp. of Milk of Magnesia in the morning with 12 ozs of very warm water. It's a "juggling act," but the side effects could be worse, and my PLTS are going down from about 900k to 600k now after 6 weeks on it.

I just hope I can tolerate it long-term, since at age 75, I have very few other choices that don't have more potential side effects, and that I don't become tolerant to it, where it no longer works. Cost for medications is also very important to me, since I am not well set financially. Walgreens sells me 30 HU for a month for only about $13. If I changed to something else, I know the cost would be much higher, since I don't have drug insurance. I use the App "Good Rx."

Yes, financial cost of meds and health care generally is a concern for me, too. Glad you found GoodRx. I get meds thru my hospital system's Medicare Advance program that are about 30 percent cheaper than chain pharmacies. It pays to shop around.

Re gastric/motility issues: My husband was pushing probiotics after consulting Dr Google, so I slapped that down. But then the hemo suggested it, and they did make a diff for me. I think yogurt would be just as good, but I have some lactose intolerance.