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Concerned about medications for ET JAK2

Blood Cancers & Disorders | Last Active: May 25 1:35pm | Replies (26)

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Profile picture for Lori, Volunteer Mentor @loribmt

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?

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Replies to "Hi @lilyn You have my sincerest empathy for the itching you’re going through. I swear itching..."

@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.