Skip to content


All discussions in this group

  • 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 ! stage 4 that means it's bad like stage 4 cancer is.  Can anyone help me understand what exactly this means?...

    21 replies 1 vote 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

    2 replies 0 votes 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.

    6 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

    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 I showed worsening in my blind eye they switched me to MTX and Humira.  I continued the Acthar, added the MTX

    2 replies 0 votes 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

    7 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
  • 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

    43 replies 1 vote 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

    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

    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 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

    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.

    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

    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

    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

    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

    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

    2 replies 0 votes Last reply
  • katld 3

    Prednisolone...... advice pleasee

    Hello lovley people So today i saw my specialist and she gave me prednisolone? Worried about taking steroids and im wondering if ths is lungs are very inflamed and so are my lym nodes around my heart. So can people tell me there views and experiences on this drug? Any tips?? Or advice

    26 replies 0 votes Last reply
  • gwen456 1

    I have SOB (shortness of breath) and fatigue and weakness 24/7

    Hi, I was diagnosed with Sarcoid in 2013. Initially, it sent me through all sorts of changes. I developed Bell's Palsy which affects your facial nerves. In most cases it lasts for 6 weeks to 6 months and clears up. I have had it for four years and I don't think mine is going away. It affects

    1 reply 0 votes Last reply
  • colboykin 2
  • AmandaPC 3

    I am soooooo tired.

    Im exhausted. Has anyone got sarcoidosis on their legs?? 3 and half years ago the lumps were the size of peas now the size of marbles. I have been told that its part and parcel of the illness and once the steroids are finished they should disappear, however i prob will never be off them because

    3 replies 0 votes Last reply
  • Ron8624 1

    Sarcoidosis or lung cancer

    All, I've been experiencing arthritis and uveitis and my rheumy suggested that I may have sacoidosis so she ordered a chest x-ray.  I had acute bronchitis so I had a chest x-ray done at a local clinic.  The x-ray found a large mass (4 cm x 2.5 cm) in my left lung.  I'm really hoping this is sarcoid

    9 replies 0 votes Last reply
  • daveh64 2

    Sarcoidosis for 31 yrs and still alive.

    I was diagnosed with Sarcoid in 1986 by the Chief of Pulmonary at the University of Kentucky.  He saved my life.  I was in for a knee operation and they always do a chest X-ray before surgery.  He just happened to walk by my X-ray the Dr. was looking at and told him to get me in for a CT Scan.  He

    9 replies 0 votes Last reply
  • claire027 2

    Sarcoid in remission

    Hi everyone my Sarcoid has gone into remission which is great but why does my ankle and foot still hurt ( which was the start point of it originally ) and why Im I still breathless when walking is it still the sarcoid ? Going back to hospital next month not completely sure what remission is or

    1 reply 0 votes Last reply
  • AmandaPC 3

    I look like I have black eyes??

    Hi all my sarcoid friends, I am sure most of you on here know my back story, however my question today is anyone suffering with what looks like black eyes? More like really dark black bags right under my eye? Also even tho I'm on the steroids my appetite has died off and I find I'm not half as

    3 replies 0 votes Last reply
  • nancy61778 2

    I was diagnosed with sarcoid 3 years ago.

    I had a lung biopsy and it confirmed sarcoid.  I was not put on any meds and symptoms disappeared. This August I had it flare up in my left eye. 3 eye doctors later I was told to go back to my pulmonary doctor to see if the sarcoid is anywhere else.   Is there a way for them to find this out

    8 replies 0 votes Last reply
  • gail 24648 3

    Ebus procedure

    Hi there, am about to have a bronchoscopy and ebus procedure, am terrified, they think have sarcoidosis, has anyone got any advice please!

    19 replies 0 votes Last reply
  • mary75557 2
  • sharon83239 2

    Hi I've just been diagnosed with sarcoidosis

    It's come as quite a shock, and don't know what to expect, I've been doing loads of research but it's always better to speak to someone who's going through the same as you, the doctors given me steroids to treat my sarcoidosis but not sure weather to take them, what's other people's opinions of

    23 replies 0 votes Last reply
  • natalie 45078 1

    I was diagnosed with pulmonary sarcoidosis in 2014

    4 months ago i had a cold and sinus infection. I took the prescribed antibiotic and everything has gone away except for this chronic cough. As of lately (the past 3 days) it's become considerably worse and I have chest pain. Also I am pregnant. I have completely lost control of my bladder it has

    2 replies 0 votes Last reply
Back to top Next

Forums Terms & Conditions