Night Sweats : I have post ET Myelofibrosis, low... - MPN Voice

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Night Sweats

flog profile image
flog
29 Replies

I have post ET Myelofibrosis, low risk and on no medication as yet, have just started having night sweats and am wondering if this is a problem others have had?

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29 Replies
Otterfield profile image
Otterfield

Yes it was definitely a symptom. Not especially uncomfortable but my pillow was often soaking wet in the morning.

flog profile image
flog in reply toOtterfield

Thank you for replying, finding it difficult to get a good nights sleep. Hope it improves when the weather is cooler.

Exeter21 profile image
Exeter21 in reply toOtterfield

Yes but being female I thought it hormones & been on HRT patches. Since Peg Interferon it has helped my sleep but I always feel warmer than years ago. I am ET Jak2. Julia 👍

flog profile image
flog in reply toExeter21

Thank you Julia, I am guessing that the warmer weather isn’t helping. We in the UK are not used to it.

Yes, this was one of my symptoms before I was diagnosed with MF in January 2021, along with joint pain in hands and feet. It has improved since taking Pegasys, hope it improves for you .

flog profile image
flog in reply to

Thank you for your reply, so grateful for all the help and advice from you all.

Simon96 profile image
Simon96

Hey Flog, sorry to read that you are having sweating issues.

Two years after my MF diagnosis, I experienced a couple of months of sweating at night. I would wake during the night with my bed wet with sweat. I don't know what triggered it or why it stopped.

In the same year I also had a couple of months of itching badly at night. Particularly my legs and torso.

Blasts had started appearing in my blood count reports so I was quite concerned. I later learned that a low level of blasts is quite common for MF patients.

The really bad sweating and itching did not return, thankfully.

For the next two decades I had some itching after showering and the occasional damp pillow around my neck. All very manageable. I count myself as lucky.

It will be interesting to read what other peoples experiences have been with sweating.

I hope things settle down for you too.

Best wishes, Simon

flog profile image
flog in reply toSimon96

Thank you for replying so encouraging to read your post, it seems it is a common problem with MF.

Pragmaticone profile image
Pragmaticone in reply toSimon96

hi Simon, am I correct in saying that you have had MF for 20 years. This will be my 3rd Year of diagnosis post ET MF

MoNut profile image
MoNut in reply toPragmaticone

Ive had ET (MPN) since 1992, 31 years and I’m still learning things everyday.

Simon96 profile image
Simon96 in reply toPragmaticone

Hi Pragmaticone, yes, diagnosed at age 35 with primary MF, transplant at age 57.

Maurabawn profile image
Maurabawn

Hi! I had night sweats and itching as 2 of my pre diagnosis symptoms of ET. Since starting treatment- Baby aspirin and Hydrea- those symptoms have just about gone. Hope you find a solution soon.

flog profile image
flog in reply toMaurabawn

Thank you for replying, it really helps to run any new symptoms past other people on this site.

Wildwood6 profile image
Wildwood6

Hi flog. I have PMF and have been on watch and wait for 18 months. Night sweats started over 3 years ago and were one of the initial symptoms which eventually led to the diagnosis of PMF. I have them every night and find it difficult to get back to sleep. My remedies are changing pyjamas and having 2 pillows, as trying to get back to sleep on a wet pillow is hard. They are definitely worse in the hot weather. Good luck!

flog profile image
flog in reply toWildwood6

Thank you for replying, seems we have a very common problem.

Planting profile image
Planting in reply toflog

Hi

Yes definitely got ET and night sweats. Much worse in hot weather. Had it for 6 years.

flog profile image
flog in reply toPlanting

Thank you for your reply, confirming what a lot of others have said, one of the many symptoms.

Itch profile image
Itch

Hello, I sympathise with the sweats (I also get them but even worse during the day). I purchased a fine mist water spray bottle & a good quality fan; lie on the bed spray all over & turn fan on - bliss!! ( not so simple when sitting in a restaurant 🥴). Good luck 🙏

flog profile image
flog in reply toItch

Many thanks to you and all the above for your advice.

Cja1956 profile image
Cja1956

I am high risk MF now but just started getting night sweats last year. Sometimes it’s just my pillow but other times my sheets are soaked top and bottom. Last night I developed a fever so my night sweats were especially bad. I’ve been taking Jakafi since the beginning of June which is supposed to help, but it’s not really working.

Otterfield profile image
Otterfield in reply toCja1956

Jakafi helped me with several things but not the night sweats I'm afraid.

Any news on your transplant?

Cja1956 profile image
Cja1956 in reply toOtterfield

Yes, I’m going back to Boston at the end of August to discuss it again with the transplant specialist. It seems like I started progressing more rapidly this summer. I now I have an enlarged spleen and liver and my hemoglobin and platelets have started dropping. My white blood cell count was always normal but a couple weeks ago it was at 23. I have a feeling the transplant is coming sooner than later.

Otterfield profile image
Otterfield in reply toCja1956

That sounds similar to the position I was in even though I felt well on Ruxolitinib.

I will be thinking of you, Jennie

Cja1956 profile image
Cja1956 in reply toOtterfield

Thanks, Jennie.

Arnoldthecat profile image
Arnoldthecat

Hi. Yes, i was getting night sweats 2 years prior to diagnosis, i though it was the menopause and had no idea i had blood cancer. Still get them but but not as much now i am on Interferon. I just get really hot at night and have had a 2 tog duvet on the bed since March!

flog profile image
flog

Thank you for your reply, so many helpful people on this site.

Conneryfan profile image
Conneryfan

Yes, I feel like a human radiator that is set to high!

lizzziep profile image
lizzziep

My sweats seem to be in a morning! Not too many at night, but when I get up they start then, only last a short while though.

flog profile image
flog

Thankyou it is definitely a very common problem.

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