Concerned about medications for ET JAK2

Asa is an abbreviation for aspirin. Typically a low dose of 81 mg is taken we Et. But of course always check one’s medical doctor,

I also have ET JAK2. I am taking Hydroxyurea. I do not take aspirin because I am already on a blood thinner for AFib. In fact, I am not allowed to take aspirin.

Yes, my naturopath has me on Nattokinese, it’s similar but different. He works w/my heme doc. So far, I am only on a daily baby aspirin.
71 yo female, ET/w JAK2 diagnosed a year ago. Holding in the low 600’s.

ASA is aspirin

Well I have found out I cannot take Hydrea or Anagralide....What's next?

I have PV and ET, diagnosed 10 yrs ago. I've been on hydrea 500 mg once a day, and have suffered no side effects, so considered myself fortunate. Then the itching began. It's my entire body, intense, relentless and impacting every day of my life. I have wheals, bumpy skin, sores, spreading blotches, and swelling on the back of my neck, waistline, palms, wrists, and now my feet and legs are swollen. Blood levels are very good, so I'm baffled. Have been to ER twice, 3 different dermatologists, and 2 hematologist/oncologists. Antihistamines have no effect. Dr. increased hydrea, and itching intensified. Just beginning gabapentin, and if that doesn't work, will look into Jakafi. Does anyone have any side effects at all with Jakafi?

Hi @lilyn You have my sincerest empathy for the itching you’re going through. I swear itching was worse than pain when I was dealing with it!
Unfortunately, itching can be a symptom of some forms of blood cancers or conditions. Especially PV where you have too many red blood cells. It may not necessarily be the HU. Though it’s suspicious that the itching increased with the dosage.

You’re not alone in this…misery loves company? Other members have written in and discussed the itching issue. Here is a link to the search for multiple conversations. https://connect.mayoclinic.org/search/

There is one personal note. Speaking with an allergist recently, we discussed this similar situation. He mentioned if there is a high level of eosinophils associated with the chronic itching sometimes taking an over the counter H2 medication (histamine blocker) such as Tagamet (cimetidine), Axid (nizatidine) or Pepcid (famotidine along with an antihistamine can be helpful. Something to talk about with your hematologist. Do you recall if your eosinophil level was elevated?
What was the reason your doctor increased the HU?

@hlyonsrn
I also just started Hydroxyurea 500 but my hem checks blood every 2 weeks. My platelets were 920k but down to 760 today after two weeks.

@susi1950

That's fast work! Good for you!

@loribmt

Thank you so much for your response. At the onset, the itching was treated with loratadine and famotidine and something else I don't recall. It didn't bring relief, however; it was somewhat manageable without the hives, etc., skin problems. One blood draw came back with platelets controlled, but HCT at 47. Dr put me on an additional 1500 mg hydrea on top of the 500 mg per day . I noticed the problem was continuing to escalate and eventually questioned the Dr about titrating the dose. She said no, the HCT levels weren't low enough . . . at that time my HCT was 38!
Platelets were 185, absolute neutrophil 1.18, and absolute eosinophils 0.96. I continued the dose she wanted, and I now am in misery. The correlation of symptom increase and dosage increase seem to be the problem. I will be calling her tomorrow.