Extensive body heat.

[Boriqua]

Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?

[Rachelthepotter]

I’m on Jakafi ( ruxolitinib) and can feel very hot the evenings especially: as if I have a fever, but my temperature is normal. No sweats, but it's uncomfortable - tho not as severe as yours sounds.

[Boriqua in reply to Rachelthepotter]

Thanks for answering Rachel ,from what ive heard so far sometimes a higher dose alievates that but then again who knows for sure, good luck to you.

[Osteomyelio in reply to Rachelthepotter]

I felt like I was burning on the inside

[Boriqua in reply to Osteomyelio]

Hey we are in the same boat, but with no idea, hope we find out whats with that, good luck.

[katiewalsh]

Hi. I’m not on Jakifi & am only pre-fibrotic MF and have this happen to me. I have to take off some clothing (where it’s possible) to cool down. But I do perspire a little. I wonder how many of us with different MPNS have this. Katie

[Boriqua in reply to katiewalsh]

Katie, I see 2 differnt Hematologists and none have a clue, I think it sucks this should be a problem solved for us. I want to wish you luck also and thanks for replying

[lynnieb]

Oh my GOD!! FINALLY!!! I carry a fan everywhere because I too feel like my blood is made of lava. My temperature can shoot up to 38.1° in the space of a minute, then go back to a normal 36.5°. I wake up in the night soaked too. It is horrible. So sorry for you. Btw, I have ET jak-ve and don't take anything for it at the moment.

[Boriqua in reply to lynnieb]

let your Hematolologist know he needs to give you something, sometimes its the medication, I use to wake up in sweat but not no more,, for medication to work sometimes takes a while and sometimes a higher dosage is needed and causes the heat problem too.I have it back for the thired time. good luck to you.

[clubdino]

I also have this problem and I'm receiving no treatment. I don't know how to explain it other than my blood feels hot.

[Boriqua in reply to clubdino]

Buddy that could be you need Jakafi or something let your Hematolologist know he needs to give you something. I started this way 3 years ago everyhing was good the heat came away and now its back on, good luck.

[clubdino in reply to Boriqua]

Well, my platelets aren't high enough and I'm too young for treatment according to the last hematologist I saw.

[Boriqua in reply to clubdino]

I would get a second opinion.

[katiewalsh]

I wish that our medical community had a shared bank of info that they obtain from us. If they had a really detailed questionnaire asking us what we experience, I think they’d recognize how many of us have the same problems and that they’re probably from our MPN or specific treatment. Then they wouldn’t tell us “No, that’s not related to your MPN,” and maybe they could come up with some ways to treat these problems. It’s frustrating for many (most?) of us. Sorry to gripe about it but it really seems that even the best experts don’t know as much as we do about physical problems associated with our MPNS. Katie

[Boriqua]

We have remind our hematologist over and over I have 2 different and they don't have a clue what it is and how bad it is its a shame.