Night Sweats

[Navy12]

Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact on my night sweats. As a last attempt I am trying Clonidine as I had read some supporting information for this drug with night sweats (although mainly for women in menopause). As yet I am having no relief from the Clonidine but will keep trying it for a while longer. I have also tried every holistic method available, chill sheet/blanket, fan, change of diet and lifestyle etc. So far nothing has worked and the night sweats are as bad as ever. My platelet levels have never been above the 950 range and I don't have many other symptoms apart from extreme fatigue.

Would be grateful if any members had any other suggestions I could try.

[JSKly]

Hello Navy 12. I’m very sorry to about your extreme night sweats. I’m wondering what your hematologist has said. Is he/she an MPN specialist? It sounds like you need someone who is a specialist. Is the interferon Pegasys?

I have PV. I was on HU for 12 or 13 years until it just wouldn’t control counts. I was then in Ruxolitinib trial. (Jakafi). Which was brilliant for a couple of years. Then went on to Pegasys. It has controlled my bloods very well. I asked to drop back dose times. Now having some very mild sweats so increasing dose again.

It takes Pegasys quite a while to work but it works for many really well.

I wish I had some truly helpful words.

I know some people have been helped by splenectomy which is an extreme choice.

I do hope you get specialist help soon.

Best wishes.

[Wewo01]

Hi Navy12,I had night sweats steadily for a couple years. Lately they have not been as bad and I am not sure why. I have gone to 100% cotton bedding including a very lightweight breathable comforter. I were only cotton jammies (or my birthday suit) to bed. I drink ice water all day and have some with my nighttime meds. I have a ceiling fan set to tornado speed! I still throw my covers off a few times a night but am not soaking with sweat anymore. I have added magnesium and vitamin E to my evening meds and I try to not eat a huge heavy meal in the evenings. Small servings of a cooked meal and sometimes just a cold sandwich or a bowl of cereal. No hot liquids at night. No caffeine after breakfast. I hope you find the right recipe for you that will relieve the night sweats!

Take Care

[ProudHarry]

Hi Navy 12,I have PV. I only had night sweats when my blood counts were high…red, platelets mainly.

Phlebotomies then Jakafi brought the counts down and I don’t have night sweats anymore.

Hope you have found relief as I write this.