PV symptoms : Hi everyone.. I’m just going to... - MPN Voice

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PV symptoms

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Hi everyone.. I’m just going to ramble .... I get up every morning first off feeling tired already then as soon as I take a drink of water, nausea washes over me. I’m on daily low dose aspirin, 500mg HU every other day, nexium ... can’t be just the HU because this nausea has been there way before I started the HU. Anyway I have many other symptoms but the fatigue and nausea is exhausting (and the pinching/itching)! It doesn’t interfere with eating or anything... it’s just a mild nausea that is there all day... ginger gravol has been my best friend ! Anyone else get the nausea everyday?

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Ann16 profile image
Ann16

Hi Keiks, sorry you’re having so many symptoms. I have nausea a lot but not every day. My nausea was before I was on HU also. The itching is horrible almost daily. I also have issues with my feet and bone pain. Do you have any problems with your feet? Take care, hope your nausea eases up. Ann16

hunter5582 profile image
hunter5582

Sorry to hear you are having a rough go of it in the stomach. The chronic nausea would be quite bothersome. I also get nausea, but it is intermittent. Ginger tea is one of my best friends for mild nausea/prevention. I also have an OTC called Nausene that can be helpful. Like you, I take a daily dose of Nexium. I have significant GERD, hiatal hernia and intermittent ephopagitis. Unfortunately, the Nexium is causing magnesium deficiency, so I have to take a substantial Mg supplement to compensate.

I do believe that all of this is connected to the MPN. MPNs are at the core inflammatory disorders. Systemic inflammation is not a good thing, including in our GI systems. Reducing/controlling inflammation is very important in controlling our symptoms. There is emerging evidence that controlling inflammation is important in preventing disease progression as well. I am working with an Integrative Medicine Specialist on controlling systemic inflammation. She has been very helpful.

The other thing that has been a really big help is paying better attention to the microbiome in my gut. In addition to modifying diet to support a healthy microbiome, I also take a daily dose of a probiotic. It has made a significand difference.

While the HU does not appear to have caused the nausea (a know side effect) in your case, it may contribute to it. HU can compromise your intestinal endothelium and has antibacterial effects that can affect your microbiome. That is something that would be worth talking to your hematologist about given that you are having problems with GI issues. Note that with symptoms like the itching - there are other meds (e.g. ruxolitinib) that are more effective.

Hope you find relief soon. All the best my friend.

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