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  • Pulmonary Fibrosis Secondary to Sarcoidosis

    Posted by Charlene Marshall on October 23, 2019 at 8:53 pm

    Sarcoidosis is a disease that I am unfortunately having to learn about quickly, as two people I know have been diagnosed with it within the last 16 months. Before my colleague was diagnosed with it, I hadn’t heard of this inflammatory disease, however, as I’ve begun researching it, I am learning there might be a relationship between Sarcoidosis and Pulmonary Fibrosis.

    I still have a lot to learn as my research is still in the infancy stages, however, it seems that this disease  primarily attacks the lungs along with the lymph glands. I’ve also discovered that Sarcoidosis is typically diagnosed within young adults, primarily between the ages of 20-40 years. Unfortunately, this fits the profile of the two people I know “recently” diagnosed with this disease. A brief overview of the Mayo Clinic’s website says that untreated pulmonary Sarcoidosis can lead to permanent scaring in the lungs (PF) and/or occasionally causing Pulmonary Hypertension as well.

    Have any of you heard or experienced someone you know living with Sarcoidosis?

    Were any of you told the development of your PF was secondary to Sarcoidosis, or that the two diseases were connected in any way? 

    Please connect with us if so, I’d be curious to hear.

    Bouleversee replied 4 months, 3 weeks ago 14 Members · 20 Replies
  • 20 Replies
  • joan-e-lynch

    Member
    October 24, 2019 at 9:35 am

    My husband got Sarcoidosis after major surgery on lymph nodes in his chest as a prevention measure after testicular cancer.  They diagnosed his symptoms later  as too much calcium in the blood and was treated with prednisone for several years.   Pulmonary Fibrosis was never mentioned.  He did not have trouble breathing.  He passed away from heart failure in 2012 after major heart surgery in 2011

    • Charlene Marshall

      Member
      October 27, 2019 at 7:43 am

      Hi Joan,

      Thank you for writing and sharing your husband’s story with us, though I am so sorry it didn’t have a different ending and sure wish it did. I think my two friends both diagnosed with Sacoidosis are being treated with Prednisone, although I am a bit worried that one (she is in the US) isn’t realizing how serious this disease is and that it needs to be regularly monitored. It also seems like a scary one! Do you know if there was any connection between the heart failure and Sarcoidosis? It seems like it can touch a lot or cause a lot of secondary issues due to where it can be and spread – the lympnodes. Thanks for sharing, sending you prayers and much love.

      Charlene.

  • laura-bush

    Member
    October 26, 2019 at 12:54 am

    I was diagnosed with Advanced Pulmonary Fibrosis in October of 2018. I was hospitalized for pneumonia and the chest CT scan showed the fibrosis. My pulmonologist and rheumatologist both feel that the fibrosis was caused by my Sarcoidosis and Rheumatoid arthritis. I had been on Plaquenil and Prednisone but it continued to progress. The next thing we tried was Cellcept and Prednisone, but my condition worsened.  Finally, I had two infusions of Rituximab.  The breathing tests and chest CT scan will be repeated on Dec. 3rd. I’m praying it has at least stopped the progression of the fibrosis.  My symptoms have not improved since the infusions.

  • Charlene Marshall

    Member
    October 27, 2019 at 7:46 am

    Hi Laura,

    Thanks for writing to us regarding this topic, and for sharing a bit of your story. I’m so sorry to hear of your advanced diagnosis, and that both specialists think it was the cause of Sarcoidosis – that must be so frustrating to hear. I know RA can also cause a host of issues, especially for the lungs. Did the shortness of breath worsen, or the fibrosis with the Cellcept? That scares me a bit as I know so many people are put on this drug for the management of IPF. Sorry to hear that the symptoms have not improved with the two infusions, I will pray alongside you that the scans are a bit better or at least show a slowing in the progression of the fibrosis in December. Hang in there, and feel free to write any time.

    Sending love and prayers over to you!
    Charlene.

  • rachel-penney

    Member
    October 29, 2019 at 8:45 am

    Pulmonary sarcoidosis can go into PF. Proven by patients, pulmonologist, CT Scans, PFT tests, etc.  It happened to me so I speak from experience.  Diagnosed with sarcoidosis by biopsies, PFT tests, symptoms, etc.,  in 1991.  Went into PF due to the sarcoidosis, proven again by biopsies, Ct Scan, PFT tests, etc. in 2008.   This connection has been known and proven for years. Fortunately, it does not happen to all sarcoidosis patients, just a small amount.

     

     

     

     

     

     

     

    • Charlene Marshall

      Member
      October 30, 2019 at 6:07 pm

      Thank you for sharing your experience with Sarcoidosis-related PF Rachel, it means a lot to me, though sorry this happened to you. I didn’t want to believe it, as I think my friend has pulmonary Sarcoidosis and I’m sad knowing the struggles with PF that I’ve had; I never wanted her to experience it. Hopefully, as you say, she doesn’t get it as some patients are fortunate not to. I’ll keep my fingers crossed!

      Kind regards, and thanks again for sharing.
      Charlene.

  • joan-e-lynch

    Member
    October 29, 2019 at 3:44 pm

    Charlene,  I have no idea if the sarcoidosis caused my husband’s heart problem.  I really don’t think so as he had a coronary bypass quite a while before the sarcoidosis diagnosis.  But who knows if it did, the doctors never told us that.  I do know that he almost died from too much calcium in his blood and was monitored closely for a long time while on prednisone.  We were naive and optimistic and did not know it was serious.   I hope your friends take care and the salt works for you.  I live by the Ocean I think it helps my breathing a lot.

    On another note, I think I got my PF from a Reclast Infusion for osteoporosis in 2014.  I had a bad reaction which lasted almost 5 months.  The doctor thought It was my heart and was sent for many tests.  I wasn’t diagnosed with PF until November 2018,  but I don’t think the doctors believe I got it from that.  Thanks for your kind words…………J

  • Charlene Marshall

    Member
    October 30, 2019 at 6:09 pm

    Hi Joan,

    Thank you for getting back to me regarding this, and sharing your husband’s story so courageously. I’ve heard prednisone can cause so many issues, so I am cognizant of that when I am on it for acute breathlessness/infections. I too hope the salt works for my friends, and I know I tend to feel better by the ocean as well. There has to be something to be said about that.

    I so appreciate your writing and sharing your experience with us. Feel free to connect any time, and sending you nothing but my very best.

    Regards,
    Charlene.

  • kris-manian

    Member
    April 7, 2022 at 2:17 pm

    Can OFev help with sarcoidosis,

    has any one tried it?

    I just came to know that one of my friends was diagnosed with this  so I am curios to know

    thanks

    kris

    • Charlene Marshall

      Member
      April 10, 2022 at 2:45 pm

      Hi Kris,

      Only a physician can advise whether or not Ofev can help with sarcoidosis. I’ve not heard of anyone with this condition on it; a friend of mine has pulmonary sarcoidosis and she was not given Ofev but I know the uses for this drug are expanding. However, I wouldn’t feel confident in anyone advising you about this unless they were a physician (pulmonologist preferred). Sorry we can’t help – I hope you’re able to find some answers, I know there’s a lot of information to figure out.
      Char.

    • lilycatlady

      Member
      April 12, 2022 at 10:07 am

      yes antifibrotics can be used if the sarcoidosis pulmonary fibrosis is deemed to be progressive. I was recently diagnosed with sarcoidosis fibrosis having been told for years it was asthma. I wish i had pushed for more testing earlier because pulmonary sarcoidosis can be put in remission with treatment, but once it progresses to fibrosis it can’t.

  • jofac-ohandlin

    Member
    April 12, 2022 at 10:05 am

    Hello Charlene,

    A quick note, I was diagnosed with IPF August 2013, my sister in 2015. But our daughter diagnosed with sarcoidosis, following the birth of her two children, about 2012, aged 37.

    As I have said on previous threads, I would like to know more about familial / gene links. My daughter ‘is my daughter’, she inherited my curly ears (as has one of the grand kids) and my very pale / fair skin. Sunburn very easily.

    If I make August, it will be 9 years, can I make 10 mmmm! Not sure.

    Regards to all contributors.

    Joe

    • Charlene Marshall

      Member
      April 15, 2022 at 8:47 am

      Hi Joe,

      Thanks for writing and sharing both yours and your daughter’s experiences with these darn pulmonary diseases. I’m sorry your both dealing with this, and I think I’d also be curious as to any genetic / familial tie between the two. Unfortunately, this isn’t something I know much about but I do know there are some Foundations exploring the genetic links to IPF. One of those is the Teleomere Project, which can be found HERE. Something worth looking into anyways! Take care, Char.

  • edward-elliot

    Member
    April 12, 2022 at 2:58 pm

    My Wife had sarcoidosis from teen to age 49 when she died in 2003. It was discovered that she had little or no Immunigobulin G (IGG) which lines our nasal area among other membranes. So she suffered frequent pneumonias, bronchiectasis, sinus infections, and lung scarring all those years. Her lungs were scarred from all the pneumonias. Not sure if pulmonary fibrosis was officially pinpointed.

  • john-styles

    Member
    April 16, 2022 at 9:03 am

    I have a cousin who developed sarcoidosis, after changing jobs and stopping work with birds and being on prednisone his stabilized and went into remission.

  • Susanne

    Member
    November 19, 2023 at 8:30 am

    I was recently diagnosed with sarkiodosis stage 5, with fibrosis. I’m suffering a lot. I have dyspnea every single day. And severe fatigue and no energy at all. My dr doesn’t help me at all. No medication at all due to discrimination. He apparently rather see me die. Anyone here with both sarkiodosis and fibrosis? What meds are you on?

  • david-bennett

    Member
    November 21, 2023 at 9:33 pm

    Sarcoidosis/PF, one doesn’t actually “cause” the other. They are both autoimmune diseases manifesting in different areas. If you have RH, sarcoidosis, or other autoimmune disease you are much more likely to develop PF at some point as an extension of you primary disease. Underlying all of these diseases is a malfunctioning immune system.

  • rod-branham

    Member
    November 22, 2023 at 5:29 pm

    My wife was diagnosed with Sarcoidosis in 2014 but hers started in her left Eye and took her sight in that eye. She has no symptoms of IPF since she knows full well what IPF is and the symptoms. I was diagnosed with IPF in about 2012 but was told it “went away” a few years later. I didn’t like the doctor so never went back. Finally, I was having some breathing issues and went to a new Doctor and got the full diagnosis and what is was and how it effects me. He never told me, like I have read here that I have a end of life span. I am on OFEV and I tolerate it well and every day is a new day to me and believe me, I live life to the fullest and do not slow down.

  • david-merrell

    Member
    November 23, 2023 at 12:43 pm

    Hi Charlene

    This article caught my attention. My younger brother ( who passed away in 2022) had sarcoidosis. In 2007 he had a double lung transplant at the Mayo Clinic in Rochester Minnesota which resulted in his having 15 more good years. In 2019 he and I and our wives were on a trip to Europe during which time I caught a serious bout of bacterial pneumonia. On my return to Canada I had X-rays to identify the pneumonia and another follow up to ensure the antibiotics had rid me of the pneumonia. It was at that stage they advised my family doctor they detected scarring on my lungs( it’s probably worth mentioning that this would have been my third bout of pneumonia that I can recall ) and recommended a CT scan which confirmed the scarring and which my pulmonologist informed me was IPF . At one point she used the term familial IPF because by then she was aware of my younger brother’s sarcoidosis and subsequent double lung transplant. That is the only time she has ever used that term and we have never had a discussion of any connectivity of our respective lung issues.

  • Bouleversee

    Member
    November 28, 2023 at 9:51 am

    <div>David’s story is very interesting because I had double pneumonia and nearly died after falling into a river when I was around 7 but when I was diagnosed with IPF at the end of 2019, getting on for 3 years after I had reported a persistent cough to my GP, by which time I was 83, I was told there was no connection. At that time, IIRC, my cough was dry but now it is very productive and choking and makes my life hell. I have had no treatment as yet for the IPF as in the UK with IPF you had to wait till it had progressed till a certain level and although that guidance was changed last November and in theory IPF patients are, like other types of PF, now entitled to Ofev once diagnosed, in practice that is still not being implemented by the team I would have to be referred to, due to lack of resources. </div>

    Am I correct in thinking that other countries prescribe Ofev (or other antifibrotic treatment) as soon as diagnosed? If so, how much difference does it make?

    I note the reference to the immune system which, I think is affected by Vit. D deficiency. When I asked for blood tests (before I was diagnosed) because I was feeling so fatigued, the results showed I was very seriously deficient in that and was put on a crash course. Johns Hopkins have established a connection between Vit D deficiency and lung diseases inter alia but I don’t think it has been proven which is cause and which effect.

    When I looked into the various lung diseases I might have before my diagnosis, I thought sarcoidosis might be a likely candidate but it has never been mentioned by my consultant.

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