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    • #11311

      Hello Everyone,

      A wonderful new forum member Lesley Scheerle shared a concern and question of hers with me that unfortunately I am able to answer. I’ve encouraged her to share her question here, which is below: can anyone relate?

      From Lesley verbatim:

      “Charlene suggested I post my ‘sweating ‘ problem in a general forum – I hope this is the right one. About 8 months before my diagnosis I began to notice I was sweating a lot just from ordinary daily living. My sister who is a nurse said it reminded her of of the Cystic Fibrosis kids who sweated just from the effort required to breath.  I’m not that bad yet, but it is a problem. Anyone out there have the same problem? I’d love to hear that I’m not the only one.  Lesley”

       

      We look forward to hearing your replies!

      Lesley and Charlene

    • #22507
      Linda Sanders
      Participant

      I’m so glad I found this post!  Lesley you are definitely not alone!  My sweats are ruining my life.  I dread going to bed because I wake up drenched.  It is also becoming more frequent during waking hours as well.  I have mentioned it to hospital, doctors, oxygen nurses, etc., but not receiving any answers.  I keep ceiling fans on 24/7 and never have the heat on, but nothing helps.  I’ve even had my hair cut short, but no joy.  I have to change the sheets every morning.  I would welcome any advice, please.  Thank you!

    • #22515
      Mark Koziol
      Keymaster

      Hello Linda, it’s unfortunate you are having these problems along with having to deal with pf. Thank you for sharing. I hope your medical team will be able to come to a consensus why you are sweating profusely. The first thing comes to my mind; do you have a fever? But, it doesn’t appear you do. Take care and keep us updated. Mark

    • #22539
      Kathey Infinger
      Participant

      I think it’s probably going to be a commonality that all of us with IPF will face at some point in our journey. I have never been one to sweat much unless I’m doing a lot of heavy duty work or really exercising hard, but lately I’ve noticed just walking around doing things in my craft room or mopping the floor will make me sweat and it’s not just a small sweat it’s like a lot of sweat for me. From what I’m hearing I don’t think it’s going to get any better as my disease progresses. Prayers for everyone out there suffering with this disease and keep fighting the good fight. Hugs and love to you all

    • #22541
      Mark Koziol
      Keymaster

      Hello Kathy, sorry to hear about your sweating problem. I used to sweat before a was inflicted with ipf but it is actually one of the things I miss. I very rarely get a good sweat in. I have been transplanted and I work out regularly. I like to believe my workouts are semi intense, however I do not perspire like I used to. I was wondering if your medical team has mentioned anything about your intense sweating. Take care, mark.

    • #22544
      Nan
      Participant

      I am awake every night every one to two hours with night sweats. I thought is was menopause. It has been going on for 3.5 years. I have not had a good night sleep in the time. When are they going to stop? if it is compounded by PF i may never get away from it? Not a pleasant thought. I feel for you. It is January and i run the air conditioning in the freezing winter at night.

    • #22550
      Andy Cowan
      Participant

      Hello all you sweaters! This is the first time I think I have anything to contribute to the very helpful discussions about IPF.

      I was diagnosed (IPF) about 2 years ago. It was picked up by accident in a CT scan checking for tumors consequent upon my MGUS (monochrome grammopathy of undetermined significance). As you can imagine, the good news of being clear of any tumors quickly abated with the bad news of having IPF. The sweating comes into the picture some 12 months earlier when I began to sweat at night from the centre top of my chest and from the back of my head. I continue to experience being woken in the early hours with a cold and wet tea shirt and pillow towel, often having to change 2 or 3 times a night. It was this condition, among others, that caused me to consult a hematologist. He was not able to identify the cause of the sweating but did diagnose a mild case of MGUS. The CT scan that picked up my IPF was just final ‘belt & braces’ check that the MGUS was not promoting tumors. Now, with the sweating experiences of my fellow IPF sufferers, I am beginning to wonder if my last 3 years of sweating has been one of the symptoms of IPF. What do you all think? @lindsa86 @nanm

      Andy Cowan  –  Rugby, England, UK

    • #22570
      Nan
      Participant

      I have read on a few websites under “symptoms of PF” night sweats. Not all as i did not see it till recently. Interesting!

    • #22586
      John Oman
      Participant

      First a disclaimer: I’m not a doctor and I have not played one on TV…

      I have, for decades in the past, suffered from massive night sweats. Also decades ago, complaining of chronic productive cough, I was diagnosed with chronic bronchitis probably as the result of previously being a heavy smoker. I was told there was nothing they could do about it, given prescriptions for Advair and albuterol and told to deal with it as best I could.

      I was diagnosed with IPF one year ago. Several months ago, learning that a productive cough was not normally considered a symptom of IPF, I insisted we try to figure out the underlying cause of the productive cough was. A sputum culture indicated a bacterial infection. An antibiotic was prescribed and the productive cough, the night sweats and some other symptoms waned. However, a month later and my earlier symptoms began to return. A subsequent sputum culture indicated heavy growth of a different bacteria – Moraxella catarrhalis. I’m just completing two back to back prescriptions of azithromycin. 25+ years of chronic bronchitis, chronic productive cough, night sweats and chronic sinus inflammation and draining are all but gone. There are a number of other symptoms that may be associated with Moraxella catarrhalis as well and include joint pain/stiffness/inflammation some nerve issues which I also suffer from and ‘perhaps’ are also waning – too soon to be sure.

      Moraxella catarrhalis is a fastidious, nonmotile, Gram-negative, aerobic, oxidase-positive diplococcus that can cause infections of the respiratory system, middle ear, eye, central nervous system, and joints of humans. It causes the infection of the host cell by sticking to the host cell using trimeric autotransporter adhesins.

      Occurrences in patients with IPF and COPD are noted. In my case, I believe the bacterial infection came first and, perhaps, was a significant contributing factor to my developing PF in the first place and for subsequent exacerbations.

      My purpose in writing this is to give you information and make a suggestion… If any of this rings a bell with you I encourage you to get in touch with your care team and push for sputum cultures to check it out.

      Moraxella catarrhalis is easily masked/confused for normal flora and therefore not easy to detect. The quality of the sputum sample and the quality of the lab to which it is submitted may affect the results. Three of my sputum samples went to LabCorp and only one came back positive. A fourth was submitted to University of Washington hospital labs and was positive. It is also resistant to some antibiotics and perhaps that explains why earlier prescriptions did not knock it out.

      Thanks!

      • This reply was modified 3 days, 14 hours ago by Charlene Marshall. Reason: formatting
    • #22591

      Hi John,

      Thank you so much for sharing your experience with us and for the important information about Morazella catarrhalis. Two rounds of antibiotics must have been rough, so sorry to hear this has been a difficult road for you but it does sound like the unpleasant symptoms have subsided, which is great. I wonder if there is any literature supporting/linking the development of IPF with this bacteria? I’m going to look it up, you’ve peaked my curiosity. So appreciate your sharing this, especially this time of year when so many other common viruses are circling us and physicians might not look at this as a possibility. I hope you continue to recover as well as possible!

      Sincerely,
      Charlene.

    • #22601
      Carl Stecker
      Participant

      I have been diagnosed with IPF since late 2010 and had remarkably little progression during the first eight years.However with two major exacerbations in the the past year the IPF symptoms have worsened sufficiently to qualify for a future lung transplant. Sweaty palms and feet occur frequently most days and I occasionally have the sheet drenching variety at night such that I place a heavy bath towel over the pillow and sheet in the middle of the night after the episode. The sweating phenomenon has only started in the past 2 months and neither my regular pulmonologist nor the transplant pulmonologist thought it related to IPF. My wife thinks it is likely a stress response ( I am acrophobic and always got sweaty palms when at heights). The increased stress of worrying about oxygen equipment,saturation level, THE call for an imminent air ambulance to the transplant center, adjusting to not being able to do as much and just tripping on the oxygen line all contribute to my stress level and this possible response.

       

    • #22604
      Mark Koziol
      Keymaster

      Hello Carl, sorry to hear about your exacerbations after going through 8 years with little or no loss of pulmonary function. Thank you for sharing your story about your perspiration adversity. Although I have never experienced this problem I do empathize with you. Take care, mark.

      • This reply was modified 3 days, 10 hours ago by Mark Koziol.
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