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Sarcoidosis

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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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  • 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

    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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  • LOCATION OF SPECIALISTS WHO TREAT SARCOIDOSIS IN THE UK

    I help run a support and self help group for people exclusively from the UK I am frequently asked where we can find a doctor who either specialises in, or expresses an interest in sarcoidosis. Any help in this matter would be appreciated, so I can then post this information on our site I'm particularly...

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  • 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!...

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  • Stage of sarcoidosis

    Just yesterday got results of biopsy and told I have sarcoidosis. Immediately started on 40 mg predglisone and azathioprine an immune suppressant. Doc didnt tell me much except basic stuff I already knew, but after more research it sounds like I have chronic or stage 4 sarcoidosis, Anybody know? I will...

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  • Stage 4 sarcoidios in tested my whole body

    I have stage 4 sarcoidios it has infested throughout my whole body. I've been on every kind of medicine nothing has worked found out I had sarcoidios when I was 17 now I'm almost 47 I recently moved to Ohio and went to the Cleveland clinic to see a sarcoidios specialist and he put me on methotrexate...

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  • child with sarcoidosis

    im 17 and i have been diagnosed since i was 11 and i had my first flair up when i was 3. with me almost being an adult im in need to find a good doctor i have a brain tumor that is the size of 3 grapes combined. also im have shingles in my left eye  causing me blindness but the sarc is causing scar...

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  • Sarcoidosis is not an excuse to be a self absorbed jerk.

    My husband has had sarcoidosis for 4 years. In that time I have been his primary caregiver. He works sporadically health depending so I have been the sole bread winner plus I do everything around the house (kids, laundry, cleaning, groceries) all of it. This is fine and I am happy to do it. At least...

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  • Opiat free pain killer

    Does anyone have knowledge of an opiat free pain killer for my sarcoidosis joint pain, I am 41 and have tried acupuncture (helps a little) pool exercise, heat, etc and the pain is getting unbearable. Please help Thank you

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  • steroid inhalers

    Hi members, I was diagnosed with stage 1 lung sarcoidosis in July  following ct scan and  chest lymph node biopsy.  Was prescribed Clenil 100  inhaler 1 puff twice daily for persistent cough which was my problem.  My cough seems to have disappeared and I am wondering should I...

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  • Confused on sarcoidosis just what is the truth

    I am having a difficult time. I tested for lyme and was positive for ehrlichiosis which is passed by a tick bite. This I had in 2011. I have had 6 and a half years with this as well as typhus. I did private bloodtests from a UK lab. I am in pain to arms, side of ribs, wrists and hands. Prior to my private...

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  • Truth

    I'm about to make a life changing decision. I've been on cit for some years now and feel normal. Trouble is. Am I normal? How do I know? It's holding me back from my decision. 

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  • Sarc in my legs 7 years ago.

    Hi I know slot of you with this illness are a lot worse than me and I'm sorry about that but after all that time my legs had become very sensitive. It's got to the stage now where my legs feel hot all the time. Anyone got this with leg sarc? Ta Ter

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  • New diagnosis

    Just told today by my doctor that my ct scan shows I have sarcoidosis in my lungs. From this it seems I have had it some time. Just scared of the unknown and what path I need to take. I see a respiratory specialist next Friday. Is there a particular questions I should ask?  Also grateful not cancer....

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  • Sarcoidosis

    Hi everyone. I had serious sarcoidosis about 12 years ago. It all started with a cough that I had for several weeks. Then i got really ill and dad a spell in hospital and confined to bed for a week. I've never been so scared in all my life as my lungs got sticky it was so hard to breathe. There...

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  • Sarcoidosis remission? Myth?

    I've suffered with sarcoid since 2007. Since December 1st 2014, I no longer take prednisolone. My consultant feels that the disease has "melted away". From my understanding, this simply means remission. Incidentally, I still suffer with extreme night seats every night and am still breathless...

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  • Just a catch up

    Hi all, Well I haven't been on here in a while so but all is good. I'm on 5mg a day now with the steroids, the usual stomach tabs and bone tabs. I have had some problems with my stomach and I am due to vistlit a gastro doc. I'm due an ultrasound in a few days for my kidneys hopefully all...

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  • Diagnosed December 5, 2017. 30 mg of prednisone

    Diagnosed December 2017 in my lungs. 30 mg of prednisone then tapered off to 15 Jan 7th. Within 2 weeks back with major SOB. Put me of QVAR inhaler.  Within 10 days I had muscle weakness really badly in legs but also in stomach area, arms and hands. Monthly x-rays show granular nodules going away...

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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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  • Dizziness/Lightheadedness has me feeling FRUSTRATED

    Im newly diagnosed with sarcoidosis but ongoing intermittent symptoms for approx 4 years. Ive recently had 2 surgeries this month and for the last several days, today in particular, I set out to do all the chores building up around the house and Im having to stop and take breaks every 10 minutes because...

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  • New to Sarcoidosis.

    It was thought that I had Sjogrens for 10 years, but Something was nagging me...THEN, a year ago my asthma sent me to the emergency room, and a mass was discovered between my heart and lung.  Post biopsy it turns out it was a lymph node doubled in size.  Also have two modules in lung.  I...

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  • 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...

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