Replies to @joaniech2004 I have Myelofibrosis. I had the horrible itching prior to being diagnosed with Myelofibrosis. Unbelievable...

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Blood Cancers & Disorders | Last Active: Apr 15 6:55am | Replies (133)

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@samlupowitz

@joaniech2004 I have Myelofibrosis. I had the horrible itching prior to being diagnosed with Myelofibrosis. Unbelievable how stupid every doctor (primary, dermatologist, gastroenterologist, allergist, rheumatologist, infectious disease, etc.) was, in that none even suspected a blood disease or sent me to see a hematologist. Primary laughed at my itching. What an idiot! But, a plastic surgeon friend gave me Xanax, and that annihilated the itching. .25 mg per night and zero itching. Perhaps the itching phase passed on its own at this point. I don’t know. I just know that itching is hell and Xanax stopped in.

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Replies to "@joaniech2004 I have Myelofibrosis. I had the horrible itching prior to being diagnosed with Myelofibrosis. Unbelievable..."

carolgk | @carolgk | Mar 30 8:15am

@joaniech2004
It sounds like you and I had similarities in our journey to MF.
I'm sorry for what you went through in regards to physicians and itching. It's frustrating and upsetting to be dismissed.

I was given Xanax as well as many other potential medications for the Itching over the past 2+ years. None of the medications helped at all. It was very discouraging.

Since I started Vonjo, I have had some breaks in Itching days and the intensity is sometimes not as bad. I'm hoping that continues and gets better with every dose.

Thanks for sharing your story.
You are the first person I have heard of, having had a similar path to MF. Oddly, somehow knowing this helps.

Wish you all the best.

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