Sarcoidosis Support Group

Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.

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  • I was told by many that the herbal supplement aloe vera mps was good for inflammation and boosting your immune system. Does anyone know anything about this? Has any one taken this at all? Can you tak this medicine while being on prednisone? Or do you have to be off prednisone in order to take it safely? If any one knows anything about these questions I would love to hear your input. Thanks again.
  • I am concerned that I might have something like Wegener's Disease or GPA. I am having various problems including Chronic Kidney Disease stage 3 and fatigue which causes me to be falling asleep during the day when watching TV. I find it hard to concentrate at times. I am going to my Kidney doctor next week. I am feeling depressed about my situation.
  • deleted_user

    Marshall's Protocol

    Anyone familiar with Marshall's Protocol?
  • I'm going to try to NOT make this a novella, but in the brief...I have a high ANA and am suspected of having CREST (scleroderma) and am being watched by a scleroderma specialist. On plaquenil for 8 months.Last year, at about this time, I had episodic symptoms of never feeling I am getting enough air. Like my lungs cannot get a satisfying breath. No blue lips or fingers unless my raynauds is...
  • jamestiotaylor

    still got it

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    well the persistent cough is back and it won't go away they upped my prednisone from 40 to 60 mg and im still taking omeprazole so the holidays were pretty good but if i can't get rid of this cough i must see another doctor cause wit my sarcoid i can't afford to be sick .
  • youpinek

    Sarcoidosis experience

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    Hi everyone!I suffered from Sarcoidosis, fortunately, I am clean now! I believe that this experience changed my life in ways I never expected before! That is why I decided to start a blog focused on that. It would mean a lot to me if you check it out, share your thoughts, experiences or even request discussion topics. Many people out there need inspiration! My goal is to help people connect and...
  • deleted_user

    Sarcoid again?

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    I was diagnosed with pulmonary sarcoid when I was 24 years old. I am now 42. Had no symptoms for years and now I'm seeing several things happening. Migraines, have had them for years but frequency has increased dramatically. Joint and muscle pain. My feet get really bad muscle cramps and have to be massaged to even straighten them out. Awful red bumps around a tattoo. Have heart...
  • deleted_user

    2nd doctor

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    ive recently kicked my first rheumy and finding another that was interested in sarcoid involvement in my ankle arthritis. what a revelation!straight away new pain management,(panadol osteo) really good!also tramadol.also recommended big dose of glucosamine sulfate(1500 mg)daily for joint repair.new mri done, now off to see another doc regarding a injection ofYTTRIUM which will fight the...
  • deleted_user

    Sarcoidosis in the eyes?

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    Hello, I was diagnosed about 8 years ago. The sarcoid was first in my skin, so I use to have red lesions and rashes here and there it was bad. But now that I am 20 years old, it has disappeared. However, It has traveled to my eyes. It has been in my eyes for about 3-4 years now and I am taking methotroxate as well as prednisone. I am wondering if anyone else has the same experience as...
  • shoese

    New here

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    I have recently been diagnosed with Sarcoidosis. This came on me quite suddenly and seemed very aggressive. Within just a couple weeks I was down for the count. I guess I may have had some symptoms for awhile but thought they were related to other things going on in my life. The amount of pain in my ankles was unbearable. A few times the wife had to help me get dressed and on my feet to be...
  • My mother is 71 and has been living with sarcoidosis for I guess close to 28 years. Her Dr is one of the top research specialist in the world. She has been through just about every kind of medication you can comprehend. She has seen just about every pain specialist you can imagine in her area.She has been through just about every study you can imagine. My mother has also been a hospice nurse, and...
  • kpj300

    Being Thankful

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    Hello all. I hope you had a wonderful day today with plenty of things to feel thankful for.I woke earlier than usual this morning--9:30. Was able to fix an almost perfect meal for Thanksgiving. Forgot an ingredient for Mac/Cheese, too tired to glaze the ham, and forgot to place the potato salad on the table. Oh well, I did my best.Right now, I'm feeling tired and drained. Can't wait to lie down....
  • kpj300

    Hello All

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    I've started a new lifestyle change for myself. Eating better and feeling more energetic. Still have pain in knees and strange pains in my arms. Staying hopeful though.I'm considering surgery on my knees, but first I would like to see if losing weight would help with the pain. It will take a while for the weight to come off, but I'm being patient.Stay strong and have a good evening everybody....
  • kpj300

    Checking In

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    Hello all. Hope you're feeling well and in good spirits.The last few weeks, I've been doing fine. Still fighting allergies -- taking Benadryl -- but otherwise alright. Which reminds me, did anyone develop allergies along with their Sarcoidosis diagnosis? Before mine, I only had hay fever. But now I'm allergic to meats, beans, ascorbic acid, certain fruits, etc. It's really crazy.The doctors don't...
  • MelissainOhio

    New here

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    Hi everyone! My name is Melissa and I just turned 31 this past june. I was having some terrible chest pains about a year ago and I went to my local hospital and they ran a EKG, Blood work and some other test and everything came back normal, they told me that I may have something like acid reflux and was given some meds to numb my esophagus and sent me home. So about a week later I was still...