Night Sweats

[flog]

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?

[Otterfield]

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

[flog in reply to Otterfield]

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

[Exeter21 in reply to Otterfield]

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 in reply to Exeter21]

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

[Robeets_33]

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 in reply to Robeets_33]

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

[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 in reply to Simon96]

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

[Pragmaticone in reply to Simon96]

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 in reply to Pragmaticone]

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

[Simon96 in reply to Pragmaticone]

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

[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 in reply to Maurabawn]

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

[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 in reply to Wildwood6]

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

[Planting in reply to flog]

Hi

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

[flog in reply to Planting]

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

[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 in reply to Itch]

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

[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 in reply to Cja1956]

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

Any news on your transplant?

[Cja1956 in reply to Otterfield]

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 in reply to Cja1956]

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

I will be thinking of you, Jennie

[Cja1956 in reply to Otterfield]

Thanks, Jennie.

[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]

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

[Conneryfan]

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

[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]

Thankyou it is definitely a very common problem.