Help for Stage 4 Sarcoidosis

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I need advice or help urgently.

My mum has 4th stage sarcoidosis...diagnosed in 2012 and like a month ago, she started having these coughs at any part of the day and a white like foam ball comes out but she continues coughing. She has a nebulizer which she says, feels like it helps but she continues coughing after it. She also feels like her ribs are cracking. Especially when she coughs. Is there something else that she can do??? Please please please help

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4 Replies

  • Posted

    Hi I have had Sarcoidosis for four years and still have coughing episodes on a daily basis. I have never had anything like a foam when coughing. The only thing I could say to you for peace of mind contact your mums consultant or Doctor and see if they have any answers. Hope you soon get peace of mind x
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  • Posted

    I'm sorry your mom is having so many problems. She can break a rib, or ribs, with coughing a lot of hard. I don't have any advice other than she needs to call her doctor as soon as possible or go to an ER if needed. I wish I could help, sorry.

    God Bless,

    Deb

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  • Posted

    Hi there,

    Sorry to hear about your mom. I was diagnosed with pulmonary sarcoidosis in March 2016. Like your mom I was coughing 24/7 and I too coughed up white foam. I had had the cough since December 2015. Before I was diagnosed I asked my consultant to give me something for the cough. I could deal with the pain which was excruciating but the cough drove me insane. My consultant gave me a becotide inhaler which I still use. I'm off steroids 2 months and I rarely cough. Everyone is different though. I think I got off lightly compared to others. I wish your mom well and hope she gets some relief soon. Kindest regards, Polly

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  • Posted

    Hi Reshel, my Mum had stage 4 sarcoidosis; it was diagnosed when she was in her twenties and she lived with it until she was 84.  Often she had to be prescribed steroids which really seemed to build up her breathing, usually when she had a chest infection.  She also used a nebulizer which relaxed her breathing and opened up the airways. 

    When she contracted the pseudomonas virus it caused her a lot of problems - those with compromised immune symptoms pick this infection from shower water and soil contact where the rest of us wouldn't be bothered by it.  They can x-ray and blood test for it but it really affected her breathing, completely sapped her energy levels and took specialist antibiotics to get rid of - which she did.  It took a hospital really studying the infections she might be carrying and giving her intravenous drugs for two weeks - we got my Mum back, personality and all after that.

    Worth saying that my Mum and sister took a trip to Rome when she was in her late seventies so, though there are ups and big downs, there is hope of huge improvement and quality of life.

    Wishing you both all the best and thinking of you,

    Vicky

     

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