This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi there everyone - I am new to this Board and am in need of some help please! I am suffering from dreadful drenching night sweats and have done so for months and months. Doctors are at a loss to explain this which has been very frustrating. Does anyone else suffer from this and if so, how often do you get them? Is this related to MS? I am on Avonex and have been so for 4 years and the sweats started up in the past two years. It has gotten to the stage that it is becoming miserable . Thanks in advance.

Hi Lilpuss, and welcome,
I don't have any experience of this drug myself, but if you follow this link:

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You'll see night sweats listed as a common side effect. I think this is the leaflet that comes with the drug, at least in Europe, so it should be reliable. Also if you search this website I'm sure other people have had similar experiences and can offer you advice. Note that these side effects don't always show up straight away, and can appear years after you begin treatment.

I don't suffer from this problem directly, but ever since I bought a Tempur mattress, complete with mattress protector, I have been unbelievably hot and clammy at night – I wouldn't be without it though!

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Dom

Hi Lilpus,
I tried to post this once but it didn't go through. Sorry if it is a duplicate.

I don't know why you are experiencing night sweats but I know of a couple of things that can help. I have a small fan on my night stand that I run all night every night. It has helped a lot. There is also a pillow you can buy (it's called a chillow), You put water in it and it remains cool all night. It is great product. I can find the web address if you'd like. Interestingly, clonazepam has also helped with the night swearts. I don't know why but am glad it does.

Hope this helps
Lori

I don't know if your problems are related to Avonex. However, I was curious when you take your shot? I've been on Avonex for 7 years and I found that my body doesn't seem to thermoregulate very well if I take it in the evening (I was getting fevers, sweats, and chills so bad I was shaking such that it was difficult to walk). I found that it's best for me to take it in the middle of the day around noon, I then try to take my ibuprofen about 3 hours later and I find that I sleep much better and have less side effects.

By the way, sometimes these things are completely unrelated to medication and I find that I overlook the obvious. For example, I have a down comforter and I was continuing to use it during the Spring and Summer and getting pretty bad sweats. Doing something as simple as switching to a lighter blanket has made a big difference for me and really helped to avoid the sweats.

NHE

Twisted Helix, Lori and NHE - wow you people are wonderful. I live in New Zealand and the information we are given about this drug is pretty minimal. The leaflet in my meds says nothing about sweats - so thank you Twisted Helix I am going to have a darn good read of the wonderful information you gave me - I really appreciate that. Lori thank you also for mentioning the Chillow that sounds great especially with summer fast approaching here. NHE I take my shot usually on a Monday night followed by Ibuprofin. Interestingly enough it is usually shot night that I do not get a sweat and have wondered whether it is the Ibuprofin that is to be thanked for this. So I have started taking Ibuprofin also on the nights I am really desperate for a dry night - some times it works, some times not. I have booked myself an appointment with a Dermatologist this Friday - I am not sure whether this is the correct person to see or not, but figured it was as good as start as any especially as numerous Doctors and my Neurologist have been far from helpful to date. My Neurologist said he had no other MS patients complaining of night sweats so he doubted it was the MS causing it (?!) and sent me for a chest xray. My blood works all seem to be fine, hormones good, chest x-ray clear, no TB or HIV, so have been left in the too hard basket. I just have this worry that however much longer down the track some other thing will present (say Lymphoma) and they will say to me "oh you have Lymphoma did you not get the night sweats? If you had come in sooner we could of done something about it, but it is too late now'. Sadly MS has received little or no attention in this country until about 3-4 years ago and I think this inexperience is showing in terms of medical advice I have been receiving. However on the upside thank goodness for the internet and people like yourselves who saved saved my sanity and offer such wonderful hope and support. Thank you!

Here is the doctor's prescribing information from Biogen for both the powdered form and the prefilled syringes.

Note that a medical dictionary can be of great assistance as you work your way through these documents. I used one to compare the three ABC drugs doctor's prescribing information that were available at the time of my diagnosis. I found after digesting these documents that I knew aspects of the different medications that even my neurologist was unfamiliar with. You can usually find a good medical dictionary at your local library or at a used book store. I happen to like Stedman's but there are many available.

NHE

Sadly, unhelpful doctors are not as rare as you might hope, wherever you live in the world. I love that phrase, " the too hard basket"! Over the years I've seen far too many people repeatedly go to the doctors with symptoms and test results that are a bit of a mystery, and it seems that if it's not a case of " symptom A; drug B; conclusion C", they lose interest. I would have thought they'd be glad of something to get their teeth into instead of robotically ticking boxes.
Temperature regulation has always been a bit of a problem for me and other people with MS I've known: for many years I used to always feel cold, but then a few years ago my thermostat seemed to trip and now I feel warm most of the time. Paradoxically, I seem to be able to tolerate hot weather better. I'm wondering: when you talk about night sweats Lilpuss, do you actually feel hot or are you just, um, leaking?

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Dom

Thank you NHE and Twisted Helix! I have lost faith in the NZ Health system frankly - my battle to get a diagnosis of MS at the tender age of 24 in 1996 was a nightmare. I had suffered from all the classic symptoms since the age of 18 and all that time they had told me it was 'all in my mind and that I was a highly strung girl' (!!??). Fortunately I never took all the tranquillisers they prescribed to me or I would have been battling drug dependency as well as MS. Glad to know it is not just this country with such issues. Twisted Helix what happens at night is strange, the first I know anything is wrong is when I am woken up by the feeling of dripping sweat running off me. I don't actually feel hot as such when I wake, just horridly uncomfortable and wet from all the leakage, lol! The other night I pushed back all the covers and turned the light on to clean up and here was a perfect sweat-wet imprintation of my body shape on the beige cotton sheets, top and bottom. Lately I have started to sleep with a cotton tee shirt on so that it absorbs some of the sweat before it makes it to the sheets - seems to have helped. Ohhhh to have a dry night would be such bliss!

oo

I was interested to read your post on night sweats.....I have been waking up a lot recently with it dripping off me and was wondering what it is that is causing it......the weather hasn't been that warm!! I'm on rebif 44 and you've got me thinking maybe it is a side effect??

oo

Thank you so much for your responses everyone! Lyon - wow, your post is amazing as I actually developed SVT at the age of 18 around the same time I started getting MS symptoms. It became very severe when I was pregnant with our first child when I was 23 and because of all the misdiagnosis of the MS, which had been put down to being all in my mind, the doctor ignored this daily heart problem as well. The result has been my baby was oxygen deprived in the womb and now aged 12 suffers from Autism as a result. I was diagnosed with MS the following year and the Doctor never even offered as much as an apology (I have had a real bad run with Doctors! ) Getting back to what you were saying Lyon, I have been aware that when I wake up drenched in sweat my heart is absolutely racing - perhaps this is what this has been! This is another avenue I am going to explore - I think we are getting somewhere! Thank you so much!

oo

Lilpuss, this is more than likely unrelated - but just in case - is there any possibility of thyroid imbalance? There are documented links between Graves disease, Hashimoto's and M.S. I had the night sweat symptoms you describe when I had Graves Disease a few years ago. Now that the Graves has morphed into autoimmune thyroiditis, the nightly drenching has ceased.

Incidentally, women in late middle age may need to insist on blood tests to help determine the cause, as there is a tendency for G.P.s to ascribe it to menopause without further investigation.

Elia

Hi Elia

Sorry to butt in on this thread, but was wondering if you can possibly supply me any information on those documented links between Grave's Disease and MS that you mentioned? I ask because my sister has Grave's and I have ms, but my neuro poo-poohed any link... ! I got some more info from Bob and LyndaCarol on how autoimmune disorders can be related, but am hopeful you may be able to give me something more specific...

Many thanks, and apologies to Lilpuss for the interruption

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Al