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    • #27639
      john styles
      Participant

      Hello all been a while since I posted but I thought I would share what I suspect is calling our disease and it appears to be auto immune. We are told to take the medication available to slow the scaring, supplement’s to slow the scaring, oxygen to help us breath and then transplant with drugs afterwards  to stop the body from rejecting the new lungs or should we just say auto immune?  Myself I have done laser twice a week for the past 26 months and will go to once a week starting next week,  my laser treatments addressed the inflammation but not the cause but did give me relief but the disease marched on. I have had usual intestinalis pneumonia for 4 1/2 years and can not take the drugs available. I have tried everything to slow the disease praying, eliminating feather pillows and comforters, ultra violet lights in the ductwork, checked for radon and treated. Recently my sitting saturations were 86 to 89, then I put in two stand alone  Allen Hepa filters and stopped having my wine and stopped higher fat snacks in the evening. 2 days later my sitting saturations jumped to 92 to 96 steady now for a week.  Here is the article from Spain  regarding research on feather pillow done about 14 years ago https://www.catalannews.com/society-science/item/feather-pillows-can-cause-a-chronic-and-eventually-fatal-breath-shortness-disease-according-to-a-catalan-study.  Myself I have had auto immune since I was 8 years old. Rash on my legs and 30 years ago with hands and mouth ( luken planus) and 10 years ago with probiotic’s.  May seem crazy but something we drink can effect our lungs. As for me I am grateful the sitting saturation’s have returned to normal and hoping the exercising saturations will improve.

       

       

    • #27643
      conni
      Participant

      @caneelbay1

      I cannot get the article you referenced and am very interested in it. When I click on it it just says page not found. Also where are you getting your laser treatment

      thank you so much for a really interesting thread

      • This reply was modified 8 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #27656
      john styles
      Participant

      if you google  “feather pillow can cause chronic ” it comes under Val de Hebrons   from 2013.   I also raised my prednisone from 5 mg to 10 mg, I was put 0n 50mg in Jan 2018 and got down to 5mg.  Funny, I do not now what caused the stabilization while sitting. I had just gotten off a week of penicillin due to I had what may have been the flu, so I stopped the wine and the chocolate and higher fat snacks, raised the prednisone and did a one week course of penicillin and then the stats raised from 86 to sometimes 96 but staying 93 to 94 while sitting.  These doctors are treating the symptom’s, not what causes our disease, they do not now what causes our lung to deteriorate in most cases. It sure is a lot of trial and no result to get where I am.  The laser is easy to find chiropractors who use them. Google chiropractor’s using laser then call them and ask if they are using a class 4, I have never been turned down after I explain my situation. The cost can be $25 to $75. I pay $42.50 here in Florida but when in the mountain’s of North Carolina I pay $25 per session.  God bless us all as we try to work thru this disease. The laser clears the inflammation but did not stop the disease in my situation.

    • #28916
      Luke R Matthews
      Participant

      @caneelbay1

      Hello John and All,

      Autoimmune disease can cause scarring of the lungs (pulmonary fibrosis).  NSIP with autoimmune features is one such diagnosis. I was diagnosed with IPF in September 2018 and put on Ofev and then esbriet. My sister has IPF as well. She went to an academic health facility for a stem cell research study. We had both been going to another academic health facility in our local state. When the stem cell people found out that my sister had a brother with IPF, they asked me to come.

      They of course did an HRCT scan. I was blown away when the doctor came in and told me my scan is not compatible with IPF. He said my fibrosis was starting at the top of my lungs while IPF starts at the bottom of the lung. He suspected autoimmune or hypersensitivity. After extensive bloodwork it was determined that I have NSIP with autoimmune features. 10-20% of patient have it without displaying any other symptoms like mixed connective or lupus.

      I was placed on an immune suppressant Cellcept which can stop but not reverse the fibrosis. After a few months on the medication all of my PFT readings went up.  If I had not gone to see this doctor I would still be on esbriet with no reduction in the inflammation in my lungs which causes fibrosis. I would have declined just like an IPF patient maybe slower though.

      I tell you my story so you can know that I was seeing the best doctors in my state and they still got it wrong. They see hundreds of IPF patients a month. Do not trust what your doctor tells you. Trust your gut instincts. This is a very difficult disease to diagnose. I will always have pulmonary fibrosis and may even progress to IPF as my mother and sister, but at least for the meanwhile I feel good and have a new outlook. Thanks to good doctor.

       

    • #28961
      Christie
      Moderator

      Hi John and Luke, thank you both for sharing your experiences. I am fascinated by the autoimmune element of this disease. I suspect my mom’s case was precipitated by an autoimmune issue that was undisgnosed, and/or allergens. My folks did remove all down products from their home (pillows, blankets, jackets, etc), and even yanked the carpet to put in hardwood. They tried changing everything in the home environment that they could think of to reduce inflammation and progression of her fibrosis. At that time her tenative diagnosis was hypersensitiviy pneumonitis/ILD undetermined. I dont know how much, if at all she changed her diet. That may have helped some…too late to find out now that she’s post transplant.

      Anyway, she wasn’t officially diagnosed with IPF until July, and by December of that year she was in end stage pulmonary failure. I wonder if her case was hard to dx because it presented like yours, Luke, with the fibrosis appearing in atypical locations. I might have to ask her pulmonolgist next time I am allowed into her clinic visit.

      I’m fascinated by this stuff. I have some autoimmune symptoms and recent blood panels showed high CRP (inflammation) but nothing else of note. It’s on my radar though. I’m curious if I might be more susceptible to autoimmune disease if my mom is, and if so, is that all connected with the genetic link to pf? These are all rhetorical questions.. I’m just thinking outloud.

    • #28966
      john styles
      Participant

      My guess it is the liver that influences the lungs.  I went for  a lung biopsy and it turned into a thoracotomy ( where they go in a deflate  lung and take samples ) which I would never ever suggest doing but when I read the surgeons report it mentioned connective disease as the cause going to a thoracotomy. When I research connective disease it is the fluid around the lungs and the liver sits next to the lungs and it can cause lung issues. I personally think that the liver is a big culprit for lung issues. We can have normal liver situations and the doctors will tell you the medication is o.k  that they suggest we take for our ailments and a drink will not hurt us but ask a gastrologist and they will tell you that medication, fat, alcohol can effect the liver and cause cirrhosis and you can have normal enzymes.

    • #28971
      Luke R Matthews
      Participant

      https://www.frontiersin.org/articles/10.3389/fmed.2019.00209/full

      i found this article to be of interest.

      Luke

      • #28991
        Christie
        Moderator

        I will check it out, thanks!

    • #29002
      Steve Dragoo
      Participant

      @caneelbay1

      Hi John,

      That’s an interesting connection between the lungs and the liver.  Many have liver issues later in life especially if diabetic or overweight.

      stay well, Steve

    • #29006
      Fay
      Participant

      Hi Everyone – thanks for your stories. I was diagnosed in 2014 initially IPF but after further testing and an array of other symptoms in 2015 re-diagnosis to Autoimmune Polymyositis causing PF. Medications to dampen the autoimmune system included IVig, Tacrolimus, Azathioprine & Prednisilone. Earlier, this year I was hospitalised with an onset of PF lung scarring. Doctors, think a problem with rogue B cells of the immune system. These B cells have their origin for adults in the bone marrow ( but initially generate in the fetal liver ) so maybe a genetic thing. Anyway, I’ve undergone treatment with Rituximab to eliminate the B cells. Still have the cough, breathlessness ( but not as severe), heart palpitations have eased and voice not as croaky. Of course these are all symptoms being treated.

      I am heartened by the ongoing research at the cellular level for the causes of autoimmune disease and PF / IPF.

      Early days yet – I’m hoping for a reprieve for all of us.

      Best wishes

      Fay

       

       

    • #30417
      Linda
      Participant

      I’m 57 and I was diagnosed with autoimmune in 1/2019 it is labeled as Multiple Connective Tissue Disease (MCTD). I was put on Plaquinel and Cell Cept for it. I have had a cough since 2018 just bad when I had bouts of illness coming on. Then in 1/2021 was so winded using stairs and carrying laundry and could not get past a fever for 16 days I was told I had CoVID pneumonia even though I had no positive test and no antibodies. They kept telling me it takes time to go away by March I demanded they take a further look and they redid the X-ray and found that the lungs looked worse then January they then ordered CT and HRCT and confirmed it was pulmonary fibrosis that my autoimmune had attacked my lungs. Still on cellcept just increased and started OFEV but am struggling with the side effects. Auto immune really does attack all other organs eventually.

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