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Old 10-18-2013, 12:38 AM   #1
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Sweats and chills, no fever

After 30+ years of living with lupus, I seem to have developed a new symptom and am wondering if others have had this. I am getting frequent chills (not shaking) that come on rather suddenly, different than just feeling cold. After I warm up, then I get sudden sweats, hot, but different than the hot flashes of menopause. These are particularly bothersome at night, when I am awakened by them, and repeatedly covering up with blankets, then having to throw everything off me in a sweat, only to get chills a little later. This occurs during day too. Has anyone else experienced this as part of their lupus? I have no fever, no signs of infection anywhere, and no signs of cancer of any kind. Peculiar and annoying.

 
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Old 10-18-2013, 02:37 AM   #2
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Re: Sweats and chills, no fever

CHILLS. I've had (without fever) since early teenage years. With these, mostly I also see signs of vascular disruption = livedo reticularis-like skin blotchiness, and also feel burning along bones. This I've written off to inflammation, which may or may not be correct.

SWEATS. I used to get the sweats one hour after taking Plaquenil, but these stopped after I'd been on Plaquenil awhile. Like most women, I had some during menopause, very few actually, then those stopped. BUT some friends report still getting sweats YEARS after their periods ceased, esp. those who'd started then stopped HRT: ceasing HRT put them thru menopause again.

You might (1) check meds for possible side effects; (2) ask GYN if possibly related to hormones; and (3) ponder if your chills & sweats might be secondary to something else that's waking you. (Since increasing liquid intake b/c of kidney stones, I don't sleep thru the night due to full bladder.) Anyway, I hope you figure it out & get your sleep back on track. Bye, V.

 
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Old 10-21-2013, 12:33 PM   #3
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Re: Sweats and chills, no fever

So I continue to have sweats alternating with chills and it is driving me crazy. I have gotten sweats in night for a long time, but this is way worse. With the chills, I feel like i've been drenched with water and sent into a deep freeze. I am on the verge of shaking and teeth chattering but not quite there. Once I warm up, the sweats starts, and when I peel off my extra clothes, the chills start. I have no signs of infection, no fever, but have been in a very bad flare since this started. I doubled my Prednisone from 10mg/day to 20/day with no change in the chills. I recently started Xeljanz for my RA/SLE but can't find these symptoms listed as side effects. This is so uncomfortable and distressing after having lupus for 30 years to all of a sudden be getting new things out of the clear blue! Any ideas would be welcome. It is like my hypothalamus control (thermostat) has gone haywire, but is not affecting my temperature.

 
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Old 10-21-2013, 02:43 PM   #4
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Re: Sweats and chills, no fever

I am sorry to hear about your severe symptoms. I would look carefully at the new medication as a possible cause. Looking up Xeljanz on wiki it mentions neutropenia as possible side effect as well as increased risk of infection. I don´t know what symptoms neutropenia would cause but the lack of fever or clear signs of infection may not exclude the possibility of a problem in that area, and the meds may suppress the fever. Being a relatively new drug the full range of side effects may not be known very well yet. I hope you will get these symptoms resolved soon.

 
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Old 10-22-2013, 01:01 AM   #5
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Re: Sweats and chills, no fever

Thanks for your thoughts! I have contacted Pfizer and reported this as possible side effects. To date, no others have reported chills/sweats without fever on this drug, but as you pointed out, it is so new, there will be more to learn about it. I am going off it and should know very soon, as the half life is only 3 hrs and it takes 5 half-lives to be cleared from my system. So by Tues. I should be free of this if it is the drug, as my last dose was Monday AM. If not, then I have to figure out if it is part of the bad flare I am in or an occult infection with fever and localizing symptoms suppressed by my Prednisone and Methotrexate. I hope it is the drug, which I can easily do without. I'll update when I know more and thanks again for your response.

 
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Old 10-22-2013, 01:52 AM   #6
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Re: Sweats and chills, no fever

Hi. If you take any meds in addition to your lupus meds, check those, too. (For example, a friend concluded hers were caused by a new SSRI antidepressant. Her night sweats stopped when she switched.)

Also, I think Prednisone can go well for years, then BOOM, side effects can appear out of the blue. (Disrupted sleep is common with Prednisone, but what about the chills/fever aspect?)

Are your chills/sweats punching a time clock? If they occur at the same time nightly, could the time at which you take certain meds provide any clues?

I believe you're smart to consider a brewing infection. (For example, I read recently that diverticulitis---which can be caused by Pred.---can present in non-specific ways like sleep disruption and urinary frequency. Who knew?)

Have you had labs done recently? Talked with your rheum? Wishing you speedy answers, Vee

 
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Old 10-22-2013, 02:07 AM   #7
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Re: Sweats and chills, no fever

Thanks, Vee. To answer some questions you posed, the Xeljanz is the only new med I've been taking, so I really don't suspect any others. The chills/sweats are round the clock, several episodes an hour with rapid progression from one extreme to the other. My rheum is out of town until Wed., by which time it will be resolved if from the med. If not resolving, I will get labs done, at least a CBC, chemistry panel, sed rate and CRP done to look for any signs of infection. Urine is clear-I keep a bottle of dipsticks at home that you can buy OTC. The only other explanation might be the bad flare, which releases cytokines from the inflammation and can cause chills/sweats. Just never had that in the 30 years I've had lupus. So I'm betting on the drug. In fact my last chill was at 1:00 AM, which is why I am up now, so I have gone 2 hrs without one, and am past the 5 half-life point of the drug! Maybe it is already resolving-I hope. Thanks for your input-much appreciated. If it turns out to be the Xeljanz, I will fill out the side effect report on the FDA website. It is valuable for obtaining additional information on new drugs, and adds to the database of side effects.

Last edited by ladybud; 10-22-2013 at 02:12 AM. Reason: added

 
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Old 10-22-2013, 03:01 AM   #8
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Re: Sweats and chills, no fever

Interesting that stopping Xeljanz *maybe* has already reduced/stopped your epidoses of chills/sweats. But I'd wager big money that you'll figure it out, as you're always (impressively) logical. I hope this try solves it, V.

 
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Old 10-22-2013, 06:06 PM   #9
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Re: Sweats and chills, no fever

Ok, mystery solved! It had to be the Xeljanz, as within about 18 hrs. of discontinuing the drug, the chills and sweats stopped abruptly and haven't recurred all day! Thank heavens. I feel much better. Sometimes the treatments are worse than the disease! Thanks for everyone's input and help. Much appreciated!

 
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