I am 73 years old. I begin itching all over my body about 5 years ago.

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Dermaologist couldn"t determine cause, then allgery doctor had nothing to add after lots of test. Then lumps and swealing in my lower legs, they hurt as if i had been bruised and discolored the sign. Had a cough that wouldn't go away, then CT scan showed 2 spots in lungs, one large one small. PET scan done and spots lite up. Surgery , a week stay in hospital, back open up, part of lung and spot removed and home on oxogen. Large spot removed not cancer. Had eye test, no sarcoidosis present. On to rumutoghist and new medication ,lefunomide 20 mg daily. Along with monthly blood test. Not a yet on medication a month.  Lower legs still swealing, dry cough, sweating at night and still itching. I have some type of auto-immunity going on in my body, but doctors can't confirm anything for sure. Looking for others in my same situtation.

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  • Posted

    Hi

    I was fortunate in that I had a very good doctor who knew about sarcoidosis. I had it in the legs and after some tests they put me on a high dose of predenserone which is a steroid. I was back on my feet in days. That was 5 years ago. The desease has left me weary and tired but at least I can walk now.

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    • Posted

      How long were you on predenserone? I have always been able to walk, the lunps in my legs cause swelling and hurt if touched. It is the things  I am having to live with, the dry cough, the low levels of O2, often in the high 80ies.  I do have COPD but it seems to be getting worse. I will be getting a CT scan shortly to see what is going on. I am 73 and I am slowing down in engery because of  age, or and progressively getting worse because Doctor's have no answers for what is going in my body. 
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  • Posted

    Hi Terry, I was wonder what your symptoms were in your legs. Since I have been diagnosed with Sarcoidosis early this year, I have developed some leg problems as well.
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    • Posted

      It started sometime before. I was struggling to get in and out of the car for instance. Fine when I was relaxed but when I went to get out I had seized up. Then my feet became very tender and it took me about 1/2 hour to get moving. Next thing is I developed big red lumps on my legs. Now what I thought. This was the last part of the puzzle. 40 mg of steroid knocked the stuffing out of the lumps and I was up and about within 3 days. I am 80% recovered. I am on no medication but it has slowed me right up with nothing like the energy I had before. Here's how I see it. I know people with it in their lungs. It's worse than mine. At least I can still walk my dogs😀
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    • Posted

      Lumps in both legs, below the knees, sore like I had bruise them and swelling .  Lumps became discolored sort of blue/black. Very tender to the touch, otherwise don't hurt. I was told to wear copression hose and live witn it!  After several hours of standing  I have elephant ankles! 
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