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Scleroderma and lung disease

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ash51077k
ash51077k

Hi my partner was diagnosed with scleroderma a few months ago and since then it has spread rapidly on his skin and now in his lungs . We have been told he has inflammation and scaring on his lungs . He is booked in to start chemotherapy for the next 6 months .i am so very worried as it has been so fast his deterioration. He was very physically fit and healthy jogging 12 miles per day before . Now he can hardly walk for 5 mins . Any advice would be very welcome.

Ash

0 likes, 4 replies

4 Replies

  • suzanne00
    suzanne00 ash51077k

    Posted

    Hi Ash,

    That sounds so scary what is happening to your partner. I have a number of autoimmune markers that are elevated for several autoimmune disorders, including scleroderma, but have not yet manifested it or several others that I have positive blood testing for (although I do have celiac disease, thyroiditis, and Lichen Sclerosis). For the last three years, my strategy has been to try to prevent the development of additional autoimmune disorders by removing triggers of inflammation, such as by radically changing my diet and lowering stress levels (as best as I can). I have had significant improvement in my health and well-being by following the adoption of an autoimmune diet, that is, by eating nonprocessed foods and lots of veggies and fruits and some meat (from healthy sources), removing grains, sugar, dairy, nightshade veggies, legumes, and most nuts and seeds, adding fish oil, vitamin D, multivits/minerals, healthy fats such as coconut oil and avocado, etc. If you search online for autoimmune diets, there is a lot of information that can help lower inflammation and has resulted in remissions for a number of people with autoimmune disorders. Then as healing takes place, some foods can be added back while watching for results. If you are interested in some specific approaches, you can let me know and I can send you a private message with the names of various appoaches that are having some success with autoimmune disorders. Take care and I hope for improvement very soon for your partner. --Suzanne

    • ash51077k
      ash51077k suzanne00

      Posted

      Thank you Suzanne that would be great some help with diet . If any thing can help we will try . Ash
    • Gary2015
      Gary2015 ash51077k

      Posted

      Hello ash. I'm hoping for the best for your partner. The symptoms you have described sound so much like those my late husband was suffering from before he passed but he was diagnosed with Dermatomyositis. He first presented with shortness of breath around May 2014 and it got progressively worse until it was exhausting to even eat or walk to the bathroom. Twenty eight days before he died a terribly itchy rash started in a shawl shape around his neck then spread down his entire back, across his forehead, and sores on the scalp. The rash was accompanied by muscle weakness that became so bad he could barely lift a coffee cup. CPK levels went from 186 on Jan 8 to 19304 within 2 weeks. After 2 weeks on Prednisone that number fell to 9262; still extremely high but headed in the right direction. Dermatomyositis affects the skeletal muscles but can also affect the heart which is also a muscle, in severe cases. I'm not trying to scare you folks, just inform of our experience in hopes that it might be helpful and to express the urgency of agressive medical care for dealing with the eerily similar symptoms your partner is having. God bless and good luck.
    • ash51077k
      ash51077k Gary2015

      Posted

      Hi Gary

      I am so sorry to hear of your sad time . I'm sure it is still very difficult to talk about . I am very hopeful that the chemotherapy will work as that is all I can do .

      If you ever need to talk I'm here x

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