How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

I use Eucerin or similar creams. Heavily oat them at night and wear cotton socks. I have had several family members with cancer and similar dry skin on other parts of the body so I was familiar with the Eucerin. Occasionally they itch and I use an anti itch cream to keep me from scratching theskin and possible breaking it open even more. I peel it off if it looks loose enough.
Seems to have gotten a bit better the last week or two. And by the way, I do think it is rare. (Seems I get all the rare things) Not even the dermatologist that supposedly has worked with the cancer center I go to knew about the possible relation to the Hydrea... He tested me twice for fungus because that is what it looked like in spite of my efforts to treat it for that. I looked it up after I talked to my sister and she told me that my brother in law, who was treated for colon cancer, had horrible blisters on his feet and he couldn't even walk on the for a while. They diagnosed him with hand-foot disease and treated it. So I looked it up and took my findings to the dermatologist who gave me some cream. 🙂

Sorry to hear of foot problems. I have not experienced this due to Hydroxyurea, so far. However, looking on internet Dyshrodic excema sounds like a possibility. Also, http://www.Podiatry.com has a definite connection to foot blistering etc due to Hydroxyurea. Might be worth checking out. Hope there is some relief.

Hi all... I am 69 and was diagnosed with ET and some fibrosis so Early PMF with Jak2 about 3 years ago. I was on Hydrea 2x500 mg daily for three years and had great management of symptoms. Unfortunately I developed a cough. Numerous CT scans showed “ cloudy lung “. No idea what it actually is and three Oncologist “ believe” it is caused by Hydrea. No way to prove it. I am waiting on a pulmonologist to examine me this month. In the meantime, they suggested Jakafi or Pegysys Injections. I decided to switch to injections. What they do not tell you is Cost. Hydrea was about $20/mo ...Jakafi and Pegysys are both class 5 drugs and my out of pocket is close to $8000/Yr. interestingly, injections at the dr office are considered Medical Device and covered by Medicare A+B 100%. So to save $8000, I can drive to dr weekly. The rules are crazy and Dr certainly do not seem to care or understand when they recommend. Step carefully when dealing with Treatments for your Rare disorders and understand the details. Good luck...hope Hydrea works for you. Ps- just got my second BMBiopsy and it confirmed no progress...I await the results of the blood panel for 25 genetic markers. Be safe

Sorry the Hydrea did not work for you, stevehurlburt, I have been on it for
over two years with good results, except for continuing fatigue and red
pinpoint rash on my face, I have tried every cream possible cannot get rid
of it. Any suggestions for this problem.
I still cannot access the forum because my cookies do not support it so I
hope SOMEONE sees this post and comments. God bless all of you who are
going through the pains of any kind of blood cancer
.?....Claire39

Hi @claire39, we can see your post. If you're experiencing technical issues with the website, your can contact me using this form https://connect.mayoclinic.org/contact-a-community-moderator/

Now to your question about the side effects from Hydrea. Rash is listed as a common side effect.
@huronshores @mjpm2406 @lefsequeen @tresman10 @cblowers1 @shenriq have you had a red pinpoint rash as a side effect of hydroxyurea?

No, that is not something I've experienced. I wish, however, I'd had it emphasized early on to avoid direct sunlight while on HU. I sat out in the sun at kids' athletic events for years and years and never worried much about it. But I really have a lot of skin damage now.

Have been on Hydrea for over 3 years, plus aspirin. Present dose totals 24x500mg per week. That is what it has taken to get platelets down to 324 at last lab test. Yes, I have had a rash on my back, which I think is from Hydrea, but how can you know for sure? @huronshores

Hi there huronshores......I don't think you can ever be sure what the rash is from but mine started Feb. 2020 after I had cataract surgery so I blamed on that but now I hear of others with ET and MPN who experience rashes in various places. I also have occasional breakouts on my scalp which I have to treat with Taro-momenta some lotion which somewhat helps also desloratadine
Allergy pills help. My platlets are currently at 408 after almost 3years, I feel it could be lower after all this time but that is where I am at. Hope all is well with everyone

this is my first time on this site. I have had ET diagnosed at 50 and 65 now. I have been from 400 to 700 on my platelets and have been doing overall good on one baby aspirin day. Mayo as well as two other doctors wanted me start on Hydrea which I was not thrilled about as I am still doing triathlons and not happy about taking a chemo drug. Started at 500 mil three times a week for the first month and went from 700 to 510 without any side effects. Doctors still wanted me below 400 so the went to one pill a day. Started to notice side effects of severe fatigue staring at about 2 pm every day. I still work full time so was effecting my job greatly. Next test I was still at 510 so they doctor had me go to 2 pills a day and side effects became much greater. Flue like all day long, stomach issues and much greater fatigue. Stoped taking for 1 day and feel better but started 1 pill a day and the severe effects came back right away. It has now been two days without the pill and still feel awful. Anybody else have this experience? Does you body adjust to this or does it escalate.

Hello markdi.....I also have ET and MPN and have been taking Hydrea for three years. I have the occasional nausea but not often enough to complain about. Before I started taking it I had extreme itchiness on my scalp but after starting Hydrea it gradually reduced. I have very little itchiness now. I do not have other symptoms that I think are related but I do have fatigue on different levels. I could not manage without Hydrea. Hope this is helpful and all the best......Claire