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Sarcoidosis

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  • 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...

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  • 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?

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  • 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,...

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  • 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...

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  • 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 

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  • 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...

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  • 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...

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  • Neurosarcoid in Meningital Tract + Sarcoidosis in Lungs.

    I have been diagnosed with Neurosarcoid in the Meningital tract of the brain. I am about to see Dr Kidd at the Royal Free Hospital. So far, the investigations have taken 3.5 years. I would like to hear of others experience of the condition and compare notes?

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  • Sarcoidosis

    Hi Lindsey   I was being treated for Asthma for 30 years. Then I had a cough which wouldn’t go away. I was admitted to hospital with very swollen legs which I had never had to this point. I was then Diagnosed with Erythema Nodosum and lofgrens Syndrome an acute form of Sarcoids. I was treated with...

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  • Sarcoidosis

    I have been told my sarcoidosis is dormat at the mo but   has damaged the body . Worried about it starting again ?? 

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  • Help !!!!!!

    hello,. I got diagnosed with Sarc July 2016 could not walk, joint pain lung problems but gradually I feel I got in control and back to my normal self again ( few aches and pains but ok ) so I had a week a few weeks back I wasn't well then last week some small blisters and a hot itchy rash appeared...

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  • 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...

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  • hello and blessings to all my Sarc brothers and sisters

    I basically need to vent and ask if anyone feels the same..... ​I get depressed, anxious, moody, and it is very hard to maintain a happy go lucky attitude that so many people expect, and they cannot understand when you don't act the way they think you should. As all of you know people see you and...

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  • Sarcoidosis really sucks

    Hi all, does anyone else have headaches that floor you, add in some constant tinnitus, persistent upper respiratory infection (staffocous Sirius) that blocks off upper airway with very large hard crusts of,,,, well,,,,, snot. My neurologist started me on botox (for migrain) but Im in agony,,,, it's...

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  • Sarcoidosis Support Scotland

    Hi All, We're having our next Scottish sarcoidosis support meeting in Perth on Thursday 1st Feb. 2018. If sarcoid affects you or a loved one, you're welcome to join us and bring a friend :-) You can register first then "buy" a free ticket here. https://www.eventbrite.co.uk/e/sarcoidosis-scotland-support-group-meeting-tickets-42089879964...

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  • New diagnosis with conflicting symptoms

    I've just been diagnosed with sarc in my lungs. But I have severe nausea, stomach and chest pains which the Dr's are struggling to diagnose. I don't have lymphnoids in my stomach. The pain is so severe I am taking regular morphine does any one else have these symptoms. I live in New Zealand...

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  • Happy New Year

    Hi everyone I feel like I'm constantly moaning about my aching joints, tierdness.....but I can walk now over Christmas my knees, legs, feet, hands were so swollen I could hardly move, I wanted to ask everyone since this flare up I'm back at work and struggling at the end of my shift I'm limping...

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  • Is it coming back?!

    Hi everyone I often check this site for updates but I am in remission for pulmonary sarcoidosis officially since 2005 - Diagnosed in 2003 (with needle biopsy) and checked again in 2005 with bronchoscopy and told I was clear.  I felt better too, actually I started getting better from Sarc soon after...

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  • 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...

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  • 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...

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  • Drugs for Sarc and Pulm Fibrosis.

    Hey. I got diagnosed with stage 3 sarc in 2010. I've been unable to work since then. Lost house, job, everything. After the first two years of going to se a pulm card, I realised there was nothing they could do. I was taking between 20mg and 50mg of pred daily.  Then depression set in. Doc set...

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  • Just diagnosed

    I just been diagnosed with stage 3 sarcoidosis. Doctor started me on prednisone daily for 6-9 months. In the past year I have been on 40-100 mg on and off more on than not. No relief. I had no idea what this was and not idea I had it until my biopsy confirmed it last week. I'm extremely depressed...

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  • Anyone got bone sarcoidosis??

    Hi all,  Just a quick question, has anyone got bone sarcoidosis? I have had lumps down my shingetting bigger in size for over 3 years. They are under the skin. If anyone knows of my history that I have wrote on here then you all know I have sarcoidosis in a few places. But this is something that...

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  • I've got 99 problems but Sarcoid ain't one

    Hi, I am 32 years old and have a myriad of autoimmune issues. It all started 2 years ago when I was running a marathon - I almost didn't finish because I couldn't breathe. After lots of tests and biopsies (and being in ICU for 3 weeks) I was diagnosed with TB. I went on TB meds for 6 months and...

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  • Dealing with sarcoidosis - advice needed for a hard working dad

    My dad, aged 68 was diagnosed with sarcoidosis this summer. He was extremely ill, lost lots of weight and it got to a point where he could barely stand.  Since being diagnosed he has been put on steroids, 40mg initially now down to 10mg. Although he has improved from his worst point,  he has...

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  • Help with Diagnosis

    Hi there. First post and i'm stressed and really confused and not sure what to think anymore. The short of this is that a dermatologist identified skin lesions in May 2017 that i was suffering from as "Cutaneous Sarcoid."  These lesions were all over may back, and arms, and back...

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  • Just diagnosed

    I just been diagnosed with stage 3 sarcoidosis. Doctor started me on prednisone daily for 6-9 months. In the past year I have been on 40-100 mg on and off more on than not. No relief. I had no idea what this was and not idea I had it until my biopsy confirmed it last week. I'm extremely depressed...

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  • Just diagnosed with heart arithmia

    Ive had sarcoid for 3 years.  It started with my glands on the sides of my face tripling in size.  Then the next problem was uveitis in my left eye leaving a "gel-like bubble" to see through.  Then  spike in right eye pressure in right eye. Recently I have developed a heart...

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  • Leg sarcoidosis.

    Just wondered it anyone else got it in the legs. Over the last 7 years since diagnosis I have had a sensation in the affected parts. Just in the last few months my legs have be feeling hot and heavy. Anyone else got this? T Ter

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  • Could this be another symptom of sarc? Please, someone reply.

    Hi. It's been a long time since I posted here. Anxiety can make things much worse for me and reading some of the posts make my fear level go up. So, I try not to come here often but I've been having some symptoms that are driving me crazy and even though I've been scared to ask, I think I've...

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  • Question

    From X-ray and ct scan radiologist and respiralogist stated certain it was sarcoidosis. Did blood work breathing test etc. Went in for my final appointment for all results and treatment plan.  I saw a different specialist as mine was on leave. I felt she did a poor job felt I had to prod to get...

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