I have severe Sarcoidosis in liver and multiple organs- does anyone have anything similar.

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I have Sarcoidosis in liver (swollen and hurting badly), lungs, lymphnodes, ovaries and full spine from lumbar to thorasic.  I am on Acthar now for 6 months waiting to hear from my Oncologist regarding my recent CAT Scan to see if it has gone into remission at all.  I can't go on steroids due to liver condition poor.

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  • Posted


    Something similar.

    I have inflammed liver and spleen both caused by sarcoid.



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    • Posted

      If you don't mind, can you share what medicines might help with your liver pain.  I have a lot of liver pain all the time.  When I lie on my side it, get stressed or get active it hurts even more

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    • Posted

      Hi Rebecca

      You need to discuss the pain relief with your doctor to get professional advise.

      When talking to him bring up the topics of Panadol Osteo which is a slow release pain killer. Also Buscopan, this relaxes the muscels and prehaps the organs in the abdominal region. It is commonly used for diverticulitus. I am caring for my mother in law. One of her many complaints is gal bladder. With not treaments available to her and no surgeon prepared to operate at age 86, I asked approval to use Buscopan to ease her abdo pains. With the doctors permission and on going checks, the abdo pains have gone and she is now very comfortable.

      It would be interesting to hear what your doctor thinks of these suggestions

      Good Luck


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  • Posted

    You poor thing, Rebecca. I cannot imagine what you must be going through.

    I have chronic sarcoid in my lungs and one of it's secondary symptoms, uveitis in my eyes.

    I struggle with mine, but your's must be horrific.

    I hope your tests show a state of remission and that you get as well as you can ASAP.

    All the best and take care.

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    • Posted

      Do you have any suggestions for pain medicine that might help?  I can't lie on my side with the liver and under my breasts in the front and the mid-back area I have frequent pain I am guessing from my lungs/lymph nodes.  Scans came back with no real improvement, however that is better than it progressing worse.  I am in Stage 3 or 4 they are still deciding.  Thanks for responding god bless.

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    • Posted

      Hello Rebecca,

      I wish I could but it's not my place to, I'm not a doctor. Especially if your liver is involved with sarcoidosis, certain painkillers could be harmful.

      You must seek specialist treatment if there is a doctor available with sarcoidosis knowlege. Perhaps your own doctor can recommend someone.

      Putting up with constant pain is awful, it's mentally draining, I know.

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  • Posted

    Hi Rebecca,

    I can relate to you. I had it serverly on my spleen which had doubled in size, also my liver, lungs and legs.

    I tried many different things to help me, if you can read my posts and replies to people some things might help you.

    I was being weaned of my steroids and had got to 3 mg 2 weeks ago however I have been suffering with bad headaches plus alot of tiredness. When I spoke to my specialist he advised I had been weaned off to fast and raised my steroids back up to see if it will help. I have been advised that if the headaches stay the same or get worse over four weeks I will be going for an mri as it's possible it could be on my brain.

    I'm trying not to think of the worst but I do still get the headaches.

    I have to weeks left before I call to let him know but I'm off to new York in 3 days so I just want to enjoy that and try not to worry and stress

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