night sweats with MDS

[pmc357]

has anyone found help for nightsweats with MDS? I am recently diagnosed and have just started Revlimid (which also can cause nightsweats).

[Neil Cuadra]

You might take a look at the night sweats and insonmnia thread.

[pmc357]

thank you Neil...tried that thread but only recommendation was from 2007 for Ranitandine (gastro med)...was hoping that perhaps there was something new out there...have tried the Tylenol (recommended by MD)...sleep isn't the problem, just the sweats...any other thoughts?

[cheri]

Hi pmc357
I feel your pain! And I have been trying to find out answers with no luck.
I am up 4-5 a nite changing my clothes and towels under my head. It is amazing how much I sweat...I don't have insomnia....and I am exhausted every day from the interuppted sleep.
Is it the MDS, the Revlimid, or what? Has anyone had success with Zantac?
My temp runs in the low 99's when I wake up, so I'm not sure if it is a temperature control thing...
Funny, I never knew this would be a side effect of anything other than menopause!

[riccd2001]

MDS notwithstanding, I also have acid reflux problems. My doc initially had me on Zantac 300mg twice a day. Over the last four years I've tapered down to 300mg per day, then to 150mg per day. I did have the occasional night sweats that were relatively mild when taking Revlimid. However, no longer do I have the sweats; so maybe Zantac has helped me. But then I'm not taking Revlimid so can't say for sure.

[pmc357]

CHERI,

had a doctor appointment today...always surprises me when they don't seem to know just how severe the night sweats can be....he prescribed Naproxen 500 mg every 12 hours...I will let you know if it helps!

[Neil Cuadra]

Originally Posted by pmc357

had a doctor appointment today...always surprises me when they don't seem to know just how severe the night sweats can be....

It may not be the case here, but some hematologists, like doctors in other specialties, tend to concentrate on the main illness or their special area of medicine rather than on the overall well-being of the patient. You can see why - they are tasked with keeping you alive, so night sweats, acid reflux, and other conditions you can live with simply aren't on their mind.

It's great when patients are lucky enough to have a doctor that considers how they are doing, not just how their disease is doing. Otherwise, you have to make an effort to speak up for yourself and ask for help with side effects and other health issues that affect you. Sometimes it's effective to get that type of help from other parts of your healthcare team rather than from your hematologist. And in the worst cases you have to change doctors or treatment centers to get the overall care you need.

[Marlene]

You may want to have your hormone levels checked to make sure that's not causing or contributing to the night sweats. You need to get quality sleep and night sweats get in the way of that.

[usaf1125]

I'm 79 and take Procrit for the MDS and ExJade for my iron overload, I have had 277 units of Blood. I can be sitting reading or watching TV and have my temp. go to 99 or 101, not every night. Also not every night I wake up soaking wet, get up change the bed change my PJ's. No trouble during the day, it's only at night. Don't know wether it's the MDS or the medications.

[cheri]

Hey pmc357
Thanks, do let me know--hope it works for you! No effect on platelets?

usaf1125--You give me hope! I'm only 54 but we seem to have the same issues. I have had a lot of blood, but it's good to know that you can handle that many transfusions! All of the meds and treatments are scary, but it's amazing what the body can tolerate.

[usaf1125]

When I was diagnosed I was more scared than when I was in the sevice and had people shooting at me. I soon learned that worry won't cure anything. Don't let it get you down, don't let it worry you, it won't change anything. Hang in there. I hope that tomorrow will be better than today, some times it is, other times it's not. I know it's a cliche, but when "life hands you a lemon, make lemonade", I prefer it with a shot of Vodka. Rember the saying " when you cry you cry alone, when you smile that whole world smiles with you"

[cheri]

pmc357--
any luck with the Zantac? Sheesh, I am sweating more than ever at night!

[Anne Yeomans]

Hey Everyone:
Doc just put me on Neurontin 300mg. at bed time has helped tremendously. Good luck and God Bless

[cheri]

That seems like a heavy duty epileptic/anti seizure drug...is there another reason is was prescribe for you?

[Anne Yeomans]

Not that I know. Years ago I was on 1600mg. fot biopoloar disorder, to shut my mind down at night. But I also have hot flashes during the day. Went thru menapause in 2004 after 1st bought with breast cancer. Seems to be working down to 2 sweats a night and have only been on it for 3 nights. Not totally gone, but better.