Do The Sweats Ever Get Stop

Night Sweats are severe and serious. All over the body. Very little sleep for weeks. I understand no treatment, no cure. Naproxen doesn't help. The Iontophoresis machine not available, expensive, limited to hands and feet. Is there any hope of this going away or getting less or does it keep getting worse and worse. Sweating 20 hours a day now.

Am I the only one?

Joseph

7 Replies

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  • Hi Joseph

    Do you have a correct diagnosis yet? I recall they didn't think it was CLL...

    ~chris

  • I had super soaking sweats with RCC. Not with CLL just yet.

  • Hello Joseph,

    Unfortunately the bad news is that the night sweats do go on for a long time and therefore are exhausting.However, I have been lucky in that they come and go. For a long time (several months ) I had them, some nights worse than others.At the moment I am having them less, but some nights are bad.People don't understand what it's like. My doctor gave me some mild sleeping tablets which I take approximately 1 or 2 a month, this helps relax me and then I can sleep for a whole night.You are right, there is no cure, I just live with it.

    Wishing you strengh,

    Markella

  • Thank you Markella, it was very kind of you to write. Since I posted that plea for info, I found there was a small Canadian study that indicated an FDA approved synthetic cannabinoid drug called Nabilone might reduce the severity by 50%. Otherwise, according to Dr. Mold, there is no evidence for anything re night sweats and there seems to be no respect or concern for this affliction.

  • But do you have a firm diagnosis of CLL yet via Flow Cytometry? If you can't get it done locally, have you considered sending a blood sample overseas for this definitive test? Night sweats in CLL are drenching sweats that soak your bedclothes and if regular enough are a trigger for treatment - and achieving remission should certainly stop night sweats. Given night sweats are most likely systemic due to the interference with the normal functioning of our immune system by CLL, topical treatments aren't going to do you much good and a 50% reduction of a drenching night sweat is hardly a worthwhile improvement.

    I presume you came across this paper from 2012, that reviewed nearly 50 years of papers on the subject?

    Night sweats: a Systematic review of the Literature

    isdbweb.org/documents/file/...

    'Release of inflammatory mediators during infections, autoimmune diseases, and malignancies can temporarily raise the thermoneutral zone (TNZ), inducing chills and shivering that causes core body temperature to rise. Sweating occurs when the levels of these mediators and the TNZ return to normal. Diurnal patterns of temperature elevation have been explained by nocturnal rise and fall of viral loads or bacteremic showers and periodic increases in interleukins (IL-1, IL-2, IL-4, IL-6) and tumor necrosis factor but no research was found to support this as a common mechanism responsible for night sweats.'

    So yes, unfortunately no-one really can be sure about the cause of a very annoying symptom that can badly disrupt valuable sleep, but at least knowing whether you have CLL or not will improve your chances of having appropriate treatment.

    Neil

  • Neil, I appreciate you sharing what you know. It is like pulling teeth to get these guys to do the Flow Cytometry Test. They keep wanting to do the Bone Marrow Biopsy. The Best Practice guidelines from the Br. Hem. Society say the BMB is unnecessary for diagnosis. The local docs say the BMB gives a more clear picture. I wonder if they even have the right panels for a Flow Cytometry or know how to interpret results.

    So an infectious disease doctor said it was complicated and admitted me to this huge 1700 bed hospital in Taiwan and I met all kinds of consultants who did all kinds of tests, including Flow Cytometry and Nuclear Tumor Scan. All the blood tests have come back negative for anything. I get the rest of the results this Thursday.

    Frankly I was ok with CLL diagnosis before there was all this confusion. First, you are really some good special people, and second, there are some worst ways to go.

    Much love to you all. Will let you know what I find out.

    Joseph

  • Hi Joseph,

    Well at least you know you don't have CLL at long last, as the Flow Cytometry test should have been included in the blood test results already provided. Please let us know what you learn from your test results after Thursday. If you do have some blood disorder, it may be appropriate to do a BMB to find out what's happening (and perhaps that may have been why they didn't see the need for a Flow Cytometry test - thinking it unlikely you had CLL. The Flow Cytometry test should have cleared you of other common leukaemia/lymphomas too...

    Neil

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