Skip to content

Sarcoidosis

All discussions in this group

Next
  • Sarcoid and the crazy aftermath

     Hello I just joined this group and I was diagnosed eight years ago my problems are wide and varied at first I was affected with joints ,skin ,lungs and liver after that came major depression among other issues.  Since then I’ve had a few flareups and if anybody needs advice or help shoot me...

    Last reply
  • Sarcoidosis in eyes

    Hi I’ve been diagnosed with sarcoidosis in my skin and both lungs waiting to see specialist, i have since summer really light sensitive eyes they get watery and hurt sometimes I can’t even bear to look at phone or tablet screen  I had eye test last year when symptoms were there sight was fine but...

    Last reply
  • Inactive sarcoidosis

    I was just recently diagnosed with sarcoidosis it is inactive. Has anyone else been recently Diagnosed with an active Sarcoidosis if so have you ever heard of anyone else have an in active sarcoidosis and it’s staying in active

    Last reply
  • Sarcoidosis

     I need all the information I can get on sarcoidosis what can I do to keep it from becoming active anything you can tell me on sarcoidosis would be helpful thank you very much 

    Last reply
  • Finding prayer offensive?

    Apparently some are finding prayer, or recognition of a higher power offensive. It wasn’t intended to be. What is intended are that my participation be from actual facts that I have lived through personally always seeking others knowledge in positivity. No one needs pessimism or disinhearted comments...

    Last reply
  • Hello all

    I have recently been told that I have sarcoidosis in my lungs. My cough is driving me mad which I have now had for 2 years. I had a broncoscopy and lung wash 6 weeks ago and have an appointment at hospital this week.  At at the moment I am really struggling with cough and feeling so uncomfortable...

    Last reply
  • Sarcoidosis

     Sarcoidosis   We have to all not give up says we do not have a cure for this terrible disease please send me some information on this thank you and God bless 

    Last reply
  • Bone Pain

    Does anyone have localized bone pain or joint pain with their Sarcoidosis?

    Last reply
  • New Sarcoidosis Diagnosis

    Hi I'm a 46 year old female recently diagnosed with Sarcoidosis which was confirmed by a chest lymph node and lung biopsy. I have several symptoms that are quite severe such as blurry vision, shortness of breath, difficulty talking due to raspy stressed voice and breathlessness, fatigue, sore joints...

    Last reply
  • Swollen lymphnodes

    Hey im wondering anyone else out here who has swollen lymphnodes?? On the neck, shoulder, chest and arm pitt only on the left side, also the top of my left foot keeps swelling but then goes down and the pain is consent so sore im at my witts end. Any advice please!!

    Last reply
  • Sarcoidosis discovery? need some help

    I was told that I have bilateral hilar enlargement however the right side is slightly larger. CT scan is Thursday. I visited my doctor for swelling on both ankles and knee pain on both. I then told her about my cough and wheeze. She sent me for a chest xray. Doctor told me all blood work is perfect,...

    Last reply
  • Severe fatigue and hallucinations

    Hi, my husband has so many issues from this disease. He also has A. Spondylitis. He has had months of sleeplessness, constant edema, some sores onlegs. Has breathing issues. DOES anyone relate to the falling asleep as though u have narcolepsy? He is sleeping better at night now with no explanation-but...

    Last reply
  • Steroid treatment!

    To all sarcoid patients or suspected sarcoid diagnosis. This is very important; please keep in mind that if you suspect you have sarcoidosis or a medical professional has suggested treatment or testing for diagnosis or confirmation. It is likely that if you have taken steroid therapy for any other treatment...

    Last reply
  • Neuro Sarc

    Hi all, is there anyone out there with confirmed Neuro Sarcoidosis,,, if so did your symptoms include stroke like symptoms i:e collapse , then excruciating head pain and numbness/weakness on 1 side, it's 5 years now since my first collapse but still have numbness and weakness on my left side,...

    Last reply
  • 10 years of sar

    Its been just over 10 years since odd things started happening to me,first was a swollen face,followed by brown marks on mainly my legs,then a cough that never went.Went to the doc's several times he had no clue,had the impression i was wasting his time.Fast forward to about June and i am now feeling...

    Last reply
  • Lymph node sarcoid

    I have been diagnosed with Sarcoid for 4 years. Originally finding a swollen hard gland in my collar bone. Lungs affected too. Recently noticed a gland in my groin which feels the same. I don't know how long it has been like that but just wondered if anyone else had also found other glands after...

    Last reply
  • Sarcoidosis Research Project

    Hello everybody my name is Kevin and I am a respiratory therapy student doing a project on sarcoidosis. Part of my project requires me to interact with real patients to find out what the day to day struggles of this disease are like. My goal is to understand this disease better so I can provide better...

    Last reply
  • 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...

    Last reply
  • Sarcoidosis

    Hi I’ve just been diagnosed, it started with my arms having purple lumps on arms. I was sent to hospital for biopsy ( a lot of toing and froing before getting results) anyway came back I have sarcoidosis, I was totally shocked ( my mum had it and had to have a lung removed and was never the same again)...

    Last reply
  • Sarcoid?

    Hi.  Im a 42 yo white female and I’m so confused.  I’ve not been feeling well for about 6 months...overall just tired.   It started with a dx of diverticulitis in September 2017. They did a chest X-ray then and my lungs looked fine. At that time I was feeling fatigued. The other thing...

    Last reply
  • ACE levels

    hi, i want to ask what are ACE levels generally in sarcoidosis of lungs?  i have sarcoidosis but no symptoms or complains....what should i do?

    Last reply
  • Ache's and pains

    Hi there I had sarcoidosis in my early twenties and got over quite quickly, but I remember my consultant telling me I would be prone to aches and pains in later life. Iam now in my sixties and my pains are all over my body especially my legs I don't know if this is anything to do with the illness,...

    Last reply
  • Sarcoidosis specialist in Scotland

    Hi all, I'm new to this forum having just had an empirical diagnosis of sarcoidosis. In hindsight I have clearly had it for years but had a major flare in the last 6 months, leading to further investigations and diagnosis. I am now waiting for a referral to a respiritory consultant. Can anyone...

    Last reply
  • Weak immune system???

    Hello all.  I have a few questions for the group.  I was diagnosed with sarcoidosis of the lungs about 4 years ago.  After my initial treatment (lasted about a year) I have lived a relatively normal / healthy life since with very minimal symptoms.  My question that I have yet to find...

    Last reply
  • Raise awareness of sarcoidosis

    I just want to say, I know I’ve mentioned this to some of you. Somehow we have to get more awareness, attention and funding to this disease. We should have to live with this it’s been prominent for 20 years plus. How can we accomplish this?

    Last reply
  • Sarcodoisis and Granulomas from fungal infection

    Hi everyone, first post! i recently discovered I have sarcoidosis. I've had it for years but just not had a name for it, so I'm quite relieved to finally get a name for it, now its on to doing something to finally stop it. I'm hoping to discuss potential ideas and solutions based on my symptoms...

    Last reply
  • Bowel problems

    Hi there I was diagnosed with Sarcoidosis 3 years ago. since then I have had many treatments including Infliximab. My problem is that I have been suffering from Diarrhea for over 12 months, I was wondering if anyone else has suffered this Thanks DB 

    Last reply
  • 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...

    Last reply
Next

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.