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  • emma64224 2
  • evelyn23542 2

    chronic pain from sarcoid - treatment

    Hi. My wife  Eve has chronic sarcoidosis in both lungs and  is  in bad to severe pain all day. She is frequently bent over in tears with the pain. Is this common with sarcoid? She can cope with the associated sarcoid problems but the pain is the mayor problem to her quality of life. She is 78 and now...

    6 replies 0 votes Last reply
  • frustrated61 6

    Stage 1 ~ 2 ~ 3 ~ 4 in sarcoidosis...what does this mean?

    I was diagnosed with sarcoidosis in 2004.  I had a biopsy of the lymph nodes and lungs and it was there and in a bad way.  I was told I was in stage 4 of sarcoidosis and all I thought was...omgosh! stage 4 that means it's bad like stage 4 cancer is.  Can anyone help me understand what exactly this means?...

    22 replies 1 vote Last reply
  • Plantpure 2

    I'm new to this...

    Hi.  Two days ago I was told that my CT scan shows sarcoid and have my first appt with pulmonologist at the end of the month.  Besides that I presented with uveitis in both eyes and after being treated for pink eye for 4 weeks I finally decided to go to my optometrist and found out that it was most likely...

    6 replies 0 votes Last reply
  • scotty49092 1

    off preds

    I have been off preds for about a month, its seems my body is trying to rebuild itself I have tight muscles, and muscle spasm, my back went out for 3 days. And I'm very sore when I wake up. I just wondering if any body else has gone through this?

    2 replies 1 vote Last reply
  • polly79837 3

    Vitamin B12 and sarcoidosis

    Hi there, I am off prenisolone a month now and feeling good. I was speaking to a client of mine and we were discussing vit b12. Has anyone heard anything about vit b12 deficiency and a link to sarcoidosis? Would love to hear views on it? Polly

    4 replies 0 votes Last reply
  • Brahmabull16 2

    Sarcoidosis diagnosis

    Hi I have had a chesty cough and shortness of breath for a while now. After a chest xray showed enlarged lymph nodes, I was sent for a ct scan and I have just been diagnosed with Sarcoidosis. Could anybody shed any light on how serious this is or can be? My doctor wants to send me to a specialist to...

    47 replies 1 vote Last reply
  • interceptor16 2

    My mother has sarcoidosis in lungs, what should she do?

    My mother, 62 yrs, has been suffering from sarcoidosis since last 5 yrs. She was responsing well to the inhaler given to her by her doctor, which she was supposed to take 2 times a day. Of late, during the tests, it was found out that the lung capacity has again gone down. But given her lung condition,...

    2 replies 0 votes Last reply
  • Kmc 1


    Anyone using Tumeric with prednisone seeing results for sarcoidosis? Seems like we could research what we are all doing that is helping.

    1 reply 0 votes Last reply
  • kira50285 1

    husband diagnosed a year ago

    my husband was diagnosed with pulmonary sarcoidosis stage 1 last July. he presented with a wicked cough and was originally diagnosed with whooping cough. His PFTs were always 100%. he was treated with 50mg of prednisone initially by our GP because the pulmonologist was on vacation. when he got back...

    7 replies 0 votes Last reply
  • katld 3

    When coming off predisolone.

    So im wondering what your experiences of coming of predisolone? Abit of background. Diagnosedd with sarcoid in september 16 been on predisolone since then 40mg untill 2 months ago. Then specialist told me to goto 10mg maintenance dose as i was struggling with predisolone side effects. Cut down to...

    6 replies 1 vote Last reply
  • Jean926 2


    Hi, I been diagnosed with sarcoidosis in 1984. I been on prednisone off and on. Now the doctor wants to put me on methotrexate.

    20 replies 0 votes Last reply
  • Jean926 2

    I'm healed!

    Today, I am healed! On yesterday, God touched my body in away I can't explain. The only thing I can say is "Keep The Faith " and believe God is in control. I haven't touched my medicine in a week. I went home to Virginia with my husband and met Aposital Flowers who touched my body I felt my inside...

    2 replies 0 votes Last reply
  • Thesufferer 2

    More questions

    Hi. It's been a while since I posted here but here I am again with more questions. I was feeling better for a while but lately I've been having what feels like bee sting -but not as painful-  in my sides but mostly my right one above the waist and it's really scaring me since I have anxiety and I just...

    2 replies 0 votes Last reply
  • Nana Deborah 2

    Recently I have been diagnosed with Pulmonary Sarcoidosis

     I find it very disheartening after learning I have Sarcoidosis that there is little to no information on this illness. I am 56 years old Woman and have most of the discribed symtoms I have read about; enlarger lymph nodes, severe tiredness, pain in my joints, sweats, weakness, coughing, and trouble...

    11 replies 1 vote Last reply
  • ttownjewelz 2


    Back in October of 2016, I got sick, and it seemed to go right to my lungs. My breathing has been labored ever since then, and I was fatigued all the time. My GP sent me for all kinds of heart test, etc., which of course came back normal.  I finally decided to take matters into my own hands, and made...

    8 replies 0 votes Last reply
  • Treasures4u1 1

    Granddaughter has Sarcoidosis in Kidneys

    My 8 yr old granddaughter has this terrible thing in her kidneys. It also affects her eyes. We were recently told that her kidneys are failing. I would love to speak with someone else who has a child that is suffering with this. I do know that she is a rare case. She is 1 of 36 nationally that is...

    2 replies 0 votes Last reply
  • dnr77 2

    Has anyone suffered

    Anyone have skin outbreaks such as in upper thigh creases like that? Husband took bactrim antibiotics for lungs and now has angry angry persistent painful splits. Anyone? Thanks

    4 replies 0 votes Last reply
  • Skesher 2

    Has anyone been prescribed methotrexate for sarcoidosis?

    I was diagnosed with lung sarcoidosis in January 2013 after tests including a bronchoscopy. I have been on prednisolone, omeprazole and alondronic acid for the last 2.5 years. Every time the steroid dose has bees reduced, theming function test has shown worse results. Due to the continued use of steroids...

    8 replies 0 votes Last reply
  • Magghe 2

    New Med Side effects

    Ok so I was doing HP Acthar gel (very similar to prednisone, but well tolerated), I still was getting worse in some parts but improved in others.  they main concern for me is sight....when I showed worsening in my blind eye they switched me to MTX and Humira.  I continued the Acthar, added the MTX until...

    2 replies 0 votes Last reply
  • ailsa june 3

    Sarcoidosis - not enough care and attention given to sufferers

    Hi, I've only just joined this forum but as a long term sufferer of Chronic Sarcoidosis I thought maybe I could say a few things on the matter. First of all I was shocked to read that one of the forum members had been told by his specialist that night sweats are not a symptom of sacoidosis. Nonsense!...

    1044 replies 20 votes Last reply
  • gail 24648 3

    Sarcoidosis diagnosed

    Hi there, thought I would post this to thank everyone on this site who have supported me and given invaluable advice when have been so worried. Finally got results yesterday, sarcoidosis definitely confirmed in lungs, biopsies on lymph glands came back clear, am getting an appointment with a sarcoidosis...

    3 replies 1 vote Last reply
  • Ruby76798 2

    Acute sarc. Bad knee's

    Hi, Iv recently purchased Knee support straps to help as my knees are really bad with the Acute Sacr. There not the slip on supports they strap around the knee and then hav extra straps for more support, their the only thing thats helping me walk at the moment but i was told not to wear them by a friend...

    4 replies 0 votes Last reply
  • shelby92952 2
  • Magghe 2


    I was recently on Acthar Gel.  Yesterday dr told me he was switching me to Methotrexate AND either Humira or Inflixamib....depending on my insurance.  He is switching me because I showed 2 new areas of hemorrahage in my eye.  Does anyone else take these two and how are your side effects?  This is newly...

    5 replies 0 votes Last reply
  • dina46599 2

    Sarcoidosis Necrosis

    i have just been told I have this at the top of my spine one week ago. I have been on Prenisone IV for 3 treatments and 110 ML tabs per day for the next 4 weeks. The Lung doctor has told me zero except not to miss that 4 week appointment. Is this usual? The only question he asked was if i had kids. I...

    23 replies 1 vote Last reply
  • shelby92952 2

    Trying to get an accurate diagnosis

    My partner has been ill for coming up on 4month. He's 29 non smoker non drinker. Works every hour for our family but unfortunately after a bad cold he was sent for further ct scans etc. After oxygen levels dropping to a low of 83 he was admitted to hospital for 2 weeks. He had blood tests every day and...

    31 replies 0 votes Last reply
  • Thesufferer 2

    Newly diagnosed. Terrified.

    Hi all. First, please bear with me if my post is a little long. I know not everyone has the time or desire to read through long posts but I really hope at least some of you will be kind enough to write even a word or two. I was diagnosed with this terrible illness 3 weeks ago after a biopsy (lung)....

    22 replies 0 votes Last reply
  • gail 24648 3
  • cc051079 2

    Could they be looking for sarcoidosis?

    Hi! I'm new to this and just have a few questions. I'm a 37 year old female non smoker. In Jan I had a few chest pains and felt a bit like anxiety we think off to a & E had chest xray e g all fine. Went a couple more weeks had dizzy spells, nausea and lack of appetite. Off to a & E all bloods ok plus...

    15 replies 3 votes Last reply
  • Ruby76798 2

    26 diagnosed

    So iv been diagnosed with Acute Sacoidosis as of last Thurs. Started with ankle pain in right ankle in Nov. gradually got worse and spread over Christmas to both ankles and my knee's. My ankles swell so big I was unable to walk or make it up steps without been reduced to tears. I was put on Ani-inflammatries...

    11 replies 0 votes Last reply
  • Katlis 3

    Lofgren syndrome

    Anyone else have Lofgren syndrome on top of Sarcoidosis?? I don't really understand what this is but all I know is past few days I can't walk on my left foot feels like I have Charlie horse in the middle bottom foot help lol

    16 replies 0 votes Last reply
  • JCJC777 1

    Sarcoid lifestyle changes?

    Dear everyone, I am age 27 male, recent diagnosis of sarcoid. My doctor has prescribed low stress life, including much fewer work hours (I work in investment banking, 12 hour days). Is this normal? Do people really change their jobs to improve their sarcoid outlook? Does doing so make any difference...

    7 replies 0 votes Last reply
  • GAB85 2
  • DonnieMac 2

    Hi all,

    Hi folks, just joined but was diagnosed with Pulmonary Sarcoidosis in 2011. Its been treated up until now with Prednisalone but this time Methotrexate. Wondering if anyone else is on this and how they feel if it is working for them? I have recently been for my 3 monthly check up and despite feeling that...

    2 replies 0 votes Last reply
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