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    • #26418
      Marianne
      Participant

      Hi all –

      Is anyone else having problems with being too chilly or too hot?  I have recently started experiencing both of these.  They come on suddenly.  When I get the chills I can’t seem to get warm – especially my legs and feet.  I put on socks and wrap up in a blanket.  After a bit, I get way too warm then have to remove socks, sweatshirts, etc.  I am wondering if this is a side effect of IPF.  I live in Ohio so temperatures in the winter are cold.  This happens when inside and usually in the mornings.  I am thinking IPF might cause circulation issues since lungs are not working properly.  Any thoughts?

      Marianne

    • #26469

      Hi @marianne

      Thank you so much for starting this topic thread! It is unfortunately one I can definitely relate to. I am more cold than hot, but when I get too cold it takes forever for me to warm up. I’ve even invested in a heated blanket, or sometimes have to run a bath. When I’m hot, I sweat through clothes which is not very often but strange when it happens. I think you’re right: it’s potentially circulation and a lack of oxygen from IPF, or it might be some side effects of the anti-fibrotics as well (maybe?). I am on Ofev…. does anyone else experience this?

      Charlene.

    • #26484
      Marianne
      Participant

      Charlene –

      It is interesting as I ask my pulmonary doctor about this issue.  His answer was he did not think it was related to IPF or OFEV and to check with my Primary Care doctor.  I had another chilly spell this morning and it wasn’t that cold in Ohio.  It actually got to 60-65 F by afternoon and there was sunshine.  Bloodwork today to check for bilirubin levels plus a liver panel.  Bilirubin levels were good but carbon dioxide and glucose levels were elevated.  I am a Type 2 diabetic but do not take medicine for it.

      In the past few days I saw an article stating that Type 2 diabetes and IPF are related.  It stated that diabetics are much more likely to have pulmonary fibrosis.  I had never heard this before but if you search online it appears that there are some articles stating this information.  Is this news to anyone else?

      Marianne

    • #26530

      Hi Marianne,

      Thanks for circling back and letting me know what your pulmonary doctor said. It seems unusual that it wouldn’t be related to IPF/Ofev but I certainly am no doctor. In my mind it makes sense: associating cold with being under-oxygenated? Hm, may be worth taking to my GP about too. Did your doctor have anything interesting to say in relation to this or your bloodwork?

      Interesting re: IPF and diabetes. I’d never heard this correlation before, and will have to do some research to better understand it.
      Char.

      • #27885
        Rajesh Subramanian
        Participant

        Hi Marianne,

        Even my mother is a Type 2 diabetes patient (more than 10 years) and in Oct 2018 we noticed the weight loss and dry cough symptoms of IPF. She is now having severe Gastrointestinal issues  (stomach burning) after more than a year of taking tablets for IPF (Pirfenidone for first 8 months and Ofev for the last 5 months).

        Rajesh

         

    • #27930
      Kathleen Ryan
      Participant

      Hi Marianne,

      the same happens to me frequently. Last night I was literally shaking from cold, and a few hours later, sweating from being so hot! Usually when I get that chilled it takes a heated mattress pad, socks, long johns and my robe under many blankets for several hours to feel ok again. There’s so much to figure out with this disease.

    • #27970
      David Swain
      Participant

      Hi All,

      I have been interested to hear that others are suffering from temperature problems. For some time now I have been experiencing symptoms of overheating, particularly in bed. This started with a burning sensation on my feet and ankles and then on my upper body as well, although I didn’t have a temperature. I mentioned this to my respiratory consultant, who said he didn’t think it was due to my IPF, but it might be a side effect of my medication ESBRIET. So I stopped the medication for 10 days but the symptoms continued.

      I found that if I got hot in bed, then I would overheat and start sweating. I’ve been helped by buying a one and a half tog duvet and sleeping with the upper part of my body exposed, even though it was winter here in England.

      My doctor suggested to try taking amitriptyline and I’ve found that this is very helpful, although not a complete cure. At least I’m sleeping better, for which I’m thankful. I’d be interested to here  if this helps others as well.

      David Swain

    • #27973
      Susan Howitt
      Participant

      I have exactly the opposite problem, can’t stay warm, even with these last few days being very warm, 24° I am here in thick jumper and fluffy blanket with hot water bottle !!!  Not on any anti-fibrotic

       

       

    • #27996
      Karen Martin
      Participant

      When I first read this thread, I found it interesting but didn’t think it was a problem for me.  Recently, I realized that I am so accustomed to turning a fan on and off to keep me comfortable that  I was just not paying attention!  I also take Esbriet, but this problem pre-dates that.  I am fortunate enough not to have horribly serious extremes, but they are there.  May have to try David’s amitriptyline.   Thanks for the suggestion.

    • #28008
      Janey Henderson
      Participant

      This is such an interesting read. I have same problem. When I’m cold nothing seems to warm me up. The hot spells are awful, I take of outer cloths because I am just boiling. The sweat makes my hair wet. It never occurred to me this could be tied in with IPF.

    • #28026
      Lois Mapes
      Participant

      Hello everyone,

      This is my first post!

      I, too, struggle with temperature control. I sleep with an overhead fan because I sweat profusely. My hair gets soaked and I actually drip! Then, in the morning I am freezing and put on a sweatshirt and heavy blanket. I knit a lot and always have a fan on.

      I don’t take any antifibrotics. I have been diagnosed with IPF for 13 years. I’m 77.

      I have learned so much from reading your posts and am very glad I have access to your group.

      Stay well!

    • #28029
      Joan Thorkelson
      Participant

      I am on high-flow oxygen 24/7 and sweat profusely at night whereby I have to change night clothing – what is causing this?

       

    • #28033
      Marianne
      Participant

      Hi everyone –

      I find it very interesting that so many of us are having body temperature issues.  I also find it I have more coughing that it also affects my body temperature – it makes me sweat and have a higher body temperature.  I recently started oxygen on exertion.  I do not yet need it at night but I am getting close.

      Wow – it seems like more of us are having this issue than I suspected.  Neither my pulmonary or primary care doctor have an answer to my fluctuating body temperatures.  I also have thyroid issues but they are controlled by medicine.  Recently had blood work done to check thyroid levels.  They were fine.

      Marianne

    • #28043
      Jane McBride
      Participant

      This was of great interest. I am on Ofev and since it seems to be stabilizing the IPF at the moment I am just trying to find ways to deal with the side effects comfortably. There seem to be any number of us dealing with the temperature range so I think of it as a side effect without official medical affirmation.
      Almost every evening, I have been freezing. Sitting wrapped in jacket with lap robe and heating pad has helped. I have used the old fashioned idea of warming the bed (with a heating pad at the foot, as a ‘warming pan’) before climbing in, also helps. Removeable bed sweaters are good, especially when you wake up in the middle of the night because it is now too warm and you don’t want to wrestle with heavy pjs or heavy bed socks. One more comfort control I can suggest is two light weight duvets. Double when you are so cold and want to snuggle, then just toss the top one later when it gets too hot.
      Fortunately, the warm times are tolerable without heavy sweating so far

    • #28056
      Randy Mauzy
      Participant

      I have recently begun to experience chills every evening somewhere between 4-7 pm.  Not much seems to help except going and getting in a tub of hot water for about 10 minutes.  This resolved the problem for another day.  I was on Esbriet for two and a half years and now Ofev for fifteen months.  Issue just started about a month or two ago. No problem with being too hot or sweats.  Pulmonologist surprised.

      • #28077

        Hi Randy,

        Oh man, sorry to hear this! Do you have any fever that accompanies the chills at all?  I know how awful it is to be so chilled you need to get in a bath to warm up; I usually get that with a fever. Did your pulmonologist have any recommendations when you shared this with him or her?

    • #28059
      Karen Martin
      Participant

      Jane, when you get into bed with those awful chills, don’t neglect warm socks.  They make all the difference for me, even warming the foot of the bed beforehand.

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